What I Went Through to Get a Diagnosis

Hi, I'm Quix.  This is my story of finally getting a diagnosis of MS.  If you have been worked up for MS and have a diagnosis - Whatever that dianosis is - Would you post below and add your story?  Thank you.

I  am a 55 year old, white female. Seven years ago I was hit by intractable vertigo and, despite being treated by one of the world's foremost experts in vertigo, was forced to retire from being a pediatrician. I had very complicated problems in the inner ear on the left. But, eventually the problems spread to my right ear also. I was diagnosed with Autoimmune Inner Ear Disease. I was almost bedridden for a good portion of the first 4 years suffering from daily dizziness, nausea, poor balance with a lot of falls, and the worst fatigue I had ever sufferd. Remember I had trained in a huge county hospital and regularly spent 36 hours straight on my feet. The fatigue with vertigo is worse!!

Two and a half years ago one morning I was putting on my shoes and socks and realized I couldn't lift my R leg onto the other to put on my socks. I could barely lift it off the ground. I saw my internist who noted pathologically hyperactive reflexes on both knees and ankles, weakness of the R hip flexors and referred me to the neurologist I had seen before for migraines.

The neurologist who I already knew thought I was a crock, examined me and found mild extensor spasticity in my right leg - mainly at the hip. He sent me for an MRI w and w/o contrast of my brain and spine. Next visit he said the MRI's were completely normal. There was an UBO (Unidentified Bright Object) in the brain, but that this was inconsequential. He said it definitely wasn't MS and that I was too old for it anyway. He sent me home. Dx Vertigo and Spasticity- mild.  Later I discovered in his notes that he thought I was faking the weakness.

During the next year I was dieting and lost 50 pounds slowly, but developed intermittent urinary incontinence. (losing weight is supposed to help that!) I also became much more fatigued than I was before, but wrote that off to being so deconditioned by spending all day in my recliner. Also, after years of living in the desert, became severely sensitive to even mild heat in my apartment. It made me weak and irrationally irritable. I was trying to get in short daily walks.  One day it was a little warmer than usual and I couldn't make it home due to sudden weakness in both legs. I was terrified, and a neighbor had to help me home.  Some months later I had a couple weeks of a weird sensation of warm water running down my right thigh. It would happen off and on all during the day.  Each time I was sure I was being incontinent, but nothing was there!

I went back to the neuro a year after he had seen me before. He repeated the MRI and did the complete battery of blood tests for the causes of myelopathy (disease of brain and spinal cord) Again the MRI was normal and so were all the blood tests. He appeared annoyed by my return to see him. He called me and asked "if I WANTED a spinal tap." This was implying that I was faking the problems and just wanted to get medical procedures. Yeah, right...

Last summer (2006) suddenly one day I could not lift my right arm even to touch my throat. It was completely useless for about 36 hours, got a little better over the next week, but still felt weak and so fatigued. When I tried to use my right hand it felt foreign as if I was trying to use someone else's hand. It slowly improved over the next couple months.  Even so I was left with residual weakness at the shoulder. Meanwhile I'm dragging my right leg, because it never got better and lurching about like a drunk sailor. So tired that I stopped leaving the house.  My sister came to live with me, because I could not handle the house and errands. I became seriously depressed.

It was several months before I could get my mental strength and courage to research my own problems. My self-esteem was non-existent. By the end of 2006 I knew the only neurological disease that fit my symptoms of weakness, spasticity, parathesias, bladder problems, fatigue, heat intolerance, and the now two attacks of problems that came, stayed and then slowly resolved was MULTIPLE SCLEROSIS. All the other possible entities had been ruled out (this is critical in the daignosis of MS if the findings aren't perfectly classic) The problem was that my MRI was normal and I was too old at 54. You can suspect MS, but you cannot diagnose it without at least 1 brain or spine lesion on MRI.

I went to the MS Society website and looked for MS specialists in my area. I found one, made an appointment and my GP was very agreeable to making a referral. The new neurologist was wonderful! Intense, smart and thorough. In retrospect he made the diagnosis of MS on that first visit. He stated that calling the spot on my MRI a UBO was laughable. It was classic for an MS plaque (well-circumscribed, oval, perpendicular to the ventricles ). He was also stunned that my other neuro had not pushed hard for a spinal tap. That is the next step when the MRI is not diagnostic. He prescribed Provigil for the fatigue (miracle drug for me) and repeated another MRI of brain and spine. He also ordered the spinal tap which I had under fluoroscopy guidance. It was absolutely painless and without complications. Those MRI's didn't show any definite new lesions, but he was very suspicious of two little areas on my cervical spine.

The tap was positive for an elevated IgG index and I had only one (of course) oligoclonal band. They like to see 2 or more. The cell count was lost!

Based on a physical exam which showed a huge amount of existing spinal cord disease, a single plaque on my brain, the normal blood work up for myelopathy, and suggestive findings on the spinal tap he made the diagnosis of MS. He said it wasn't a "slam-dunk" diagnosis, but he was at least 90% sure. He, and many opther experts in the field, feel that for many people the MRI machines are just not sensitive enough.  They improve every year or two. His concern was than in just 2 years, I was already very disabled. I've had intensive physical therapy and still required a brace on my R leg and I need to use a cane. The disease was/is progressing fast. He put me in the category of Relapsing Remitting only because if I had a progressive type I should have many, many more brain lesions, but my disease is acting more like the rarest type called Progressive Relapsing.

In my reading late onset MS is often marked by faster progression of disability and more by motor dysfunction than by sensory problems. This fits with what I have had.

So this was my short course to diagnosis. Not nearly as horrific as it has been for many of you, but it has been devastating to me. The scary loss of function, the not knowing why, and the anger at being dismissed and discarded by my doctor. Ya know, the vertigo had been quite enough....

I'm now two months into therapy with Avonex.  I'm through a new relapse (my fourth in the 30 months).  A repeat MRI of my C-spine and T-spine with one of the newest generation of MRI machines which has a more powerful (3 Tesla) magnet showed half a dozen old spinal lesions which were missed by the previous older machines.  I'm having constant electric shocks down my left leg when I flex my neck.  Dozens of times a day.  It's called L'Hermitte's Sign, and it is common in MS, but new to me.  It is felt to indicate upper spine lesions that press on normal nerves when the neck is flexed.

So I, too, am a Stanger in a Strange Land.  I hope that here on the forums I can learn from you and share some of my understanding of how things work from 23 years in medical practice.

Quix

[T-lynn]

I have found with MS that nothings black nor white.

I feel for you and the the **** from a neuro you trusted.

You would think in todays medical community that they would of come up with a more concrete way of testing.

I was DX'd at the age of 40 and it has progressed rapidily since the DX.I have had 2 major attacks since March.Hospitalized once.

Walking is my greatest difficulty,but refuse to give in.

I have the INO/BINO with severe blurred left vision with absent peripheral vision.I have developed the stocking sensation on my foot .Right leg feels like I'm wearing long socks,I 'll be bare footed and trying to remove a sock.

It took my DX 2 years through many test and specialist.My MS was DX;d on a brain MRI,cortical atrophy, and several evoked potentials as my neuro suspected meneire's disease as the cause of vertigo,off balance and tinnitus.Low and behold it was not meneire's.

I have memory issues,can remember 20 years ago things that happened ,but couldn't tell what I ate for lunch yesterday.

Suffer  from fatigue,chronic spasticity,numbness and burning pain,tinnitus,bladder problems,continuous tingling both legs with electric shocks in feet more predominant on the right.

Heat intolerate.So far this year we have had 15 days in the high 90's (yuck)

I wear leg braces on both legs and use a cane for balance.

My reflexes are hyper except for right foot is absent,right hip was weak

Been on rebif ,starting the 5th month.

Quix,
Have had l'hermittes,I hope it passes soon for you.I can get it to where it travels straight to the feet.It is anoying and painful.

For anyone that is going through the dx and don't agree with the neuro you are seeing,see a MS specialist or get a second or even a third opinion.

I can't stress enough about keeping a journal and requesting medical records,mri reports,blood work and the DRs reports.Not all DRs are up front with there patients ,they may suspect a disorder and have some of the concrete evidence,but dismiss patients as being psycotic.many neuro's want a concrete case of MS,they want the burden of proof(MCDonald CRiteria Score).
Very few use the Poser scale today.

I agree as to being a stranger in a strange land,its a learning process as to what is a MS symptom and what is attributed to something else.Heck I didn't know the UTI is attributed to my MS,heck I hadn't had a UTI for 20 years prior to this last one.
Learning when to call your neuro or especially when to go to the ER,because one side is paralized.That was my March attack.I waited it out maybe to long(had to see son's wrestling meet)last one of the season.

Its not any easy disease to DX as so many others mimic it and its livable with limitations and learning not to over exert ones self (My down fall).

Quix, you have done an awesome job answering the medical side of this disease.I sure appreciate it as I know other do.(I only have 2 weeks of steroids left,and it will be the last for many many months)
Thank you for all your knowledge and support.

[floridamom2]

Thanks so much for sharing your stories with us.  I have , I guess, been looking for a quick fix to a problem that may not be easily fixed.  It is hard when you are a problem solver and cannot get a clear answer.  I truly feel that if I do get a final diagnosis it will be easier to swallow than what I am getting now which is "we'll try this and come back in six weeks to evaluate".  I know I can keep going for 2nd opinions and more testing but the results may be the same.  I just want to know the issue and move on with my life and it does not seam possible right now.  That is exhausting, trying to wrap your head around this disease and understand that so many life changes can occur.


My story so far:

Mid May: I was in a hot room and I had an episode of extreme palpitations that lasted about 30 seconds where I thought I was gonna faint.  The next week I woke up one morning with a cramp in my right calf.  Being a nurse, in the back of my head was "DVT??" but I am not one to complain or run to the doctor,  The cramp was annoying and difficult to walk on but no redness, swelling or warmth.  4 days later it went away but in it's place was extreme fatigue, right leg > left weaknes and tingling, numbness and twitches with vibrations.  I felt like my blood sugar was low but only affecting my legs.  Sx cont.  

1 week later I had a strange sensation that I could not see "things were moving and I could not get my eyes to stay still" went to Opthal. negative exam.

Following week I started having trouble w/ my speech - slurring words, trouble getting my words and thoughts together and out.  I thought "I am truly turning into a hypochondriac now!"  I have told those close to me what has happened but felt like I would get the same response that my head was telling me from the neuro if I really told them everything.   In the middle of all this I had my first neuro exam with a positive Babinski's sign in R foot and numbness documented on right leg.  MRI of Brain and C & T spine were nl.and I was sent home to try an increase in my antidepressant at the beginning of this month. By then (6 weeks into this episode) my Sx were subsiding a bit and I was starting to have some "good" days where they would not bother me as much.  I thought well it must have been a virus and it is almost over.  
  
5 days later after my temp went up to 99.4 F due to hormones my leg symptoms started increasing again, not being able to handle the shaking and vibrations that were taking over my days & nights, I called neuro and asked for a small dose of steroids to see if it will calm my "nerves".  Started them yesterday and have had no real relief yet but am waiting and willing to do anything to get this freakin thing to stop!  Sorry, I am a bit angry today that I can't do anything to help myself!!


Quix & T-Lynn:  
Thanks so much for sharing your stories with us.  I have , I guess, been looking for a quick fix to a problem that may not be easily fixed.  It is hard when you are a problem solver and cannot get a clear answer.  I truly feel that if I do get a final diagnosis it will be easier to swallow than what I am getting now which is "we'll try this and come back in six weeks to evaluate".  I know I can keep going for 2nd opinions and more testing but the results may be the same.  I just want to know the issue and move on with my life and it does not seam possible right now.  That is exhausting, trying to wrap your head around the possibility of this disease and understand that so many life changes can occur.  I am truly inspired by the way you both have handled your physical limitations with a "no one or thing is gonna stop me" attitude.  That gives me the hope I need to continue my quest for answers!  

Be well!  Kristin



  

[floridamom2]

Sorry I moved things around and forgot to delete.  Proofreading with no memory can be dangerous!

[T-lynn]

Don't give in to the neurological community.

I didn't post in my original posting that it took the 4th neuro to give me a DX.All the evidence was there ,but the first 3 neuro's had there heads,well you now where.

I walked into neuro no 4's office many medical records and test results plus the actually mri films and he reveiwed the records .MRI's and done the office neurological exam and before I left his office he says you have MS.Told me to get informed on the disease modifying meds and we'd disguss these meds at the next appt.

Kristen stay strong,positive and continue your search for a dx if MS or not.

I plan on keeping my attitude,it gets me through the days and it helps when I need to get things done.I have no intention of slowing down.To young to let this disease get me.(well the physical therapist might get me first)

Stay strong and get copies of those medical records and test results.

[MedicGirl]

Sorry for the above attempts to post-my vision is getting worse. I am a 30yr old female. I have been a paramedic/firefighter for eleven years. About a week ago I was trying to paint my nails, when my close vision became blurry/and dbl. It lasted for an day and then cleared up. I went to the eye doc the next day, she said no disease was found and told me to go to the ER. At the ER, they took a med history-I was born with SVT/MVP ( I have taken heart meds all my life), I developed RLS and heat intolerance last year. My dbl/blurred vision had returned and gotten worse. I started to have balance problems, headaches, cold hands/feet, numb hands/legs, and vertigo. The CT was clear, my eye's wern't traking. The LP showed very high protein levels. The doc called a neuro who said it was prob MS. He scheduled a MRI next week. He said I cannot work until this is resolved-due to what I do for a living. They said the MS would change my life forever, and I would prob have to change jobs. Besides my heart problems, I have never been on the side of a patient. I know MS medically, but not as a patient. My s/s all fit  and make sense now. I am a firefighter, and now I can't tolerate heat. ( I haven't gotten used to that yet)

[floridamom2]

T-Lynn : Thanks so much for your encouragement and advice!!!  I am working on my timeline now and plan on getting copies of all my records this week.  Your attitude and strength make me smile!!  Have a great rest of the weekend!

MedicGirl:  My husband is a medic/firefighter/cop and he broke his back last summer on the job.  It was very scarey and he was in ICU for 10 days w/ his life and career on the line.  He is now walking and almost back to full duty, last year I was almost incapacitated with the fear of what our future would be like.  I have not been diagnosed yet but have had sx for 2 months now and realize once again that life is full of twists and turns that I cannot plan for.  God only gives me as much as I can handle but also provides the answers to help me along the way.  I believe that is why I have found you all!!  Please stay strong and know that deep down everything will be OK and that positive attitude will make all the difference in the world in how the next few months play out for all of us.  

Have a great Sunday everyone!
Kristin  

[MedicGirl]

Thank-you!! That made me smile. The hardest part right now is the vision loss. I can't drive or work-that is hard for me being so active. I've had MRI's is the past year for a back injury. The ER doc called me this morning and said there were lesion's found on it. ( I guess they forgot to mention this last year) He said the MS dx is correct. I can handle that, but I hope and pray my vision improves.

[T-lynn]

Your vision will improve.Have you seen a neurologist yet?
What part of your spine did they find the lesions?
Solu-medrol IV infusion therapy is the normal choice of treatment of visual loss,blurriness and optical neuritis.Usually after a few days the vision improves.

Sorry to hear that you have joined the rest of us mser's.Its liveable and we have bad days.
My initial DX was in 1998 after a back surgery and I couldn't walk,I dismissed the DX and didn't have another attack until September 2004.I was re Dx'd in December of 2006 .Been on Rebif since.

Hopefully you'll get through this attack with no or very minimal residual effects and have years between the next attack.

Stay positive and ask lots of questions.Like Quix said a stranger in a strange land,she quoted it just right.That is how my MS makes me feel.

[SUGAR~~]

Thank you for sharing the intimate details of your illness. My story is on another post about CNS Demyelinating Disease. Thanks again and Good Luck with the vision issues. (MedicGirl) I have been having creepy issues with my vision as well!!

[MedicGirl]

The doc said the lesions were found on the c-spine. They gave me prednisone at the ER. The scarey part is not knowing. But reading everyone's stories does help. They are inspiring. I will pray for everyone.........

[Momzilla]

At least you have some evidence now.  Some answers.  Does it mean anything to you?  How do you feel?

I wish you the best~

Chris*

[MedicGirl]

I don't think it's hit me yet. I have so many questions, fears. I am scared-right now because I have lost vision. I don't know what the future will bring.

[kellykat60409]

maybe I should go to a spealialist my MRIs show normal but I still have ms sytomos (sorry I am not a good speller) all my blood work, and eeg, emg, visual test came back normal. the nureo I went to doesn't suppect MS and thinks it just a heat allgery.

quick I am glad you finally got a dianoseses and I will go to the ms soctiety. the only thing with me to get insurence to approve it I have to get it approved with pcp

[grannyhotwheels]

My symptoms started in August of 2004.  I was at work and my left hand started going numb.  It was like it was asleep and no matter what I did it would'nt wake up.  A few days later it was all the way up my arm.  Within about 2 weeks it was in both hands and arms.  I went to a workmans comp doc. who thought I might have carpel tunnel.  After a nerve conduction test that was ruled out.  He sent me to a neurologist who ran several test  (which all came back negative) and decided it was all in my head.  A few weeks later it was like a band moving down my body.  First my stomach, hips, thighs, shins, and feet.  Everything went numb and tingely.  I then went to my family doctor who ran several test and found nothing, so he sent me to another neurologist.  She found 1 lesions in the brain and several which where called insignificant also in the brain and from the 2nd to the 6th vert. in the neck was complete demyelination.  She was pretty sure it was MS but would not diagnose me.  By then I was in some pretty severe pain.  The only treatment I received was pain pills and anti-seizure medication for the tremorsl.   I was finally layed off after my short term disability ran out.  I could not afford to pay for the insurance myself so I then had no insurance.  My neurologist would no longer see me.

A year went by and my family doctor was great.  He helped all he could and kept my pain medicine perscribed for me.   I called Mayo Clinic and they set me up an appointment and told me not to worry about no insurance that they would work out a payment plan.  When we got there it was just the opposite.  We had to borrow about $12,000.00 or more to pay for the test.  We also had to pick and choose which test where most important because we could'nt afford all of them.  To make it short we left there with no diagnosis and no money.

Finally in June of 2007 my medicare started.  I had an appointment on June 1st with a neurologist.  We went over there with every test, film, and medical record that we could get our hands on.  After a couple of weeks for her to go over everything and get new MRI's to compare plus order a couple of more test, she diagnosed me with MS.  She has spent the last 2 weeks trying to get a hold of my doc. from Mayo to see if he could help her in determing which medication might be best for me to go on.  Just like I thought he will not call her back.  I knew he would'nt because my family doc. had tried many times to no advail.

I am now on a 6 day round of steroids and will be starting either avonex or rebif within the next couple of weeks.

It has been the hardest 3 to 4 years I have ever had to deal with.  I am now in a wheelchair and in constant pain.  I have seizures on accasion, no bladder control what so ever, almost no mobility from the waist down, loss of memory, constant tingeling and weakness in both hands, slurred speech, no sexual functions, depression, anxiety, and a list of other things.

I am 42 years old and I have been married to the most wonderful man in the world for 25 years.  We have 3 children who are 24, 23, and 13.  Plus 4 grandchildren.  Three and a half years ago I was running, fishing, playing ball, and a very athletic person until this hit.

I'm not bitter.  God has a reason for everything and I may never know what that reason is but I will still live my life for him.  I do pray that when I start my treatment and rehab that someday I will be up on my feet again.  It just takes alot of prayer.

Thank you for listening to me.

Grannyhotwheels  (Carol)

[floridamom2]

I am so sorry that your diagnosis has taken so long and has ended up with you in a wheelchair!!  Thanks so much for sharing all of this with us!!  I am just starting this journey for a dx but am using your story to inspire me to keep pushing the doctors to do what is in my best interest, not theirs!

You are a testiment to courageous women everywhere and a blessing to this forum!!!!!  I agree that God has a plan, read my post above about my husbands ordeal / miracle?? !!  

Take care of yourself and have a great day!
Kristin

[JonM]

My diagnosis of MS came fairly quick.  Fortunately I did not have to wait years and years like some of you.  I am a 48 yr old Male living in Florida the past 30 years (wish it was 35, you veteran MSers will know why)

Around Halloween last year (2006) a spot on my right abdomen below my ribs became very, very sensitive and within a few days spread around to my back spine.  This persisted and within a day or two my lower right leg weakened and I experienced foot drop, had a hard tiome with the accelerator on the car.

I seeked out what these symptoms meant on the web and I kept coming up with MS.  I went to my PCP and his assistant (PA) thought I was experiencing shingles and that I would break out any day.  She told me to come back in a week and gave me Flamvir.  A week later the pain in my abdomen was more profound, had spread and was going completely numb.  My right leg was better and the foot drop was nearly gone, but my left leg started becoming patchy numb which over several
days moved up into the left buttock and perineal area.  My PCP ordered MRIs with and without contrast and herpes blood tests to rule out shingles.

Blood tests were negative. My brain MRI noted several "white spots" and the peri-ventricular margins were inflamed suggesting a "demyleinating" disease.  That coupled with the clinical presentations caused my PCP to diagnose me with MS.  He recommended I see a Neurologist.

My Neurologist was not pleased that my PCP had already declared me definite MS and he ordered cervical and thoracic MRIs, blood tests and a Lumber Puncture.  The MRIs indicated a small lesion in the cervical spine (could explain the constant ringing in ears and right ear itching I've had for several years now).  Thoracic showed an active lesion in T8 or so and that is consistent with the skim pain/numbness I'm experiencing.

My blood tests revealed positive serum ANA screen with speckled pattern and titer 1:40.  Other blood work including CBC was normal.

The Lumbar Puncture (aka Spinal Tap) was not as bad as I thought.  I had it performed in a hospital under local anaesthetic by a PA. The ***** of the anaesthetic injection actually was more painful than the LP itself.  The results of this was that myelin basic protein was negative, but positive for three oligoclonal bands, as well as an elevated CSF protein and CSF albumin and CSF IgG.  The CSF IgG synthesis rate was elevated too.  I believe these are all consistent with an inflammation within the CNS, typical of MS.

I did not have the evoked visual test or the thinking test, my Nuero thought it was unnecessary.

When I came in to the Neurologist to review these results my symptoms had eased (remitted).  He told me then I was definite MS. He strongly encouraged me to start treatment with either Avonex or Rebif ASAP.  His PA gave me the pros and cons of each and I decided on Avonex, primarily because of the neutralizing antibody concerns and that I'm not a needle freak and was easily trained to self inject.

I asked my Neuro for a second opinion and he asked whom and told him I wanted to see Peter Dunne at USF in Tampa, He agreed.  While I was waiting for that appointment I started my treatments and felt my symptoms reversing but they did not fully go away.

To this day (6 months later), my right abdomen is still numb and my feet buzz a lot and legs feel much weaker and somewhat clumsy.  My right arm has started to feel a little weaker too.  I'm hyper reflexive in my legs and the ringing in my ears is louder and my ears itch more.  I scored a 1.5 on the EDDS scale and I think I'm the same today.  I'm constantly experiencing transient symptoms, like headaches, pain behind my left eye, blurry vision, vibrations, weakness swallowing and clearing my throat, aspirating spit, food, water, patchy numbness in left leg, right hand tremors, lhermitte’s syndrome, sexual dysfunction, foggy thinking and difficulty multi-tasking.  I'm unable to distinguish these as MS or drug related and they have a tendency to run in multi-week cycles.

Back to my 2nd Opinion.  Probably the best thing I have ever done for myself!!!  Doctor Dunne and his assistant Lise Cassidy were wonderful, thorough and very reassuring.  Oddly I was warned they are not proponents of Avonex, but they did not speak poorly of it or try to convince me to switch.  They confirmed the diagnosis.  It pleases me to know I have them to back me up.

I have since figured out that a brief episode I had several years ago with my right arm going weak for a few days was probably my first exacerbation.  At the time I thought I had slept on it wrong and bruised a nerve.  But when my right arm became weak several months ago, I remembered the feeling, it was the same and I connected the dots.  I had also experienced days/weeks of foggy
thinking.  I remember telling my wife that I was growing old rapidly because I would sit at my desk sometimes mentally paralyzed trying to do my work.  Now I know why.  

I'm still not sure about this last symptom.  Because of the timing I'm more and more convinced it is MS and that the diagnosis I got a year and half ago of mild carpal tunnel syndrome in both wrists is partially incorrect.  I went to the Neurologist with complaints of hands and fingers going numb while I slept and I was concerned that one day I would have irreversible nerve damage.  He performed that EMV or whatever test with the wires and shocks to your arms.  Hence the DXof mild carpal tunnel.  He did not propose surgery just a wrist splint and advice on keeping my hands straight, which has generally worked, however I believe the timing of this is suspicious and from all the posts I have read of others experiencing this issue I think there's a connection. if not MS itself.

At the time I went through this I spent a lot of time worrying over which flavor of MS I have.  I have done much reading online and still do not know where I stand.  Because of my history, I’m pretty certain that at the very least I started Relapsing Remitting and can't tell whether I’m still that or now Secondary Progressive.  Dr Dunne in Tampa told me not to worry about, that he had several elderly gentlemen that had been diagnosed Primary years ago and were still walking and functioning.  That alone gave me hope and I have since learned that there’s quite a bit of debate of what is MS and what may actually be another disease or two like MS.  From what I understand the response to my treatment Avonex will provide more information and I’m not due for the follow-up MRIs for several more months.  So for now I wait, deal with the “waxing and waning” and have gotten back into the my “normal” routine.

JonM

[Quixotic1]

Hi, would Katina, T.O. fire, Siddy, and I'm blanking on our other Diagnosees, write up what your wish of your story to diagnosis and place it here?  Thanks!  Q

[Johnny Utah]

Just bumping it up, took me a while to find it and it's a great read. Anyone new here should review this.

Johnny

[crystaly]

I was quite moved by your story and in lots of ways it is similar to my own apart from the fact I have only had symptoms for 3 + yrs . I would like to say though that the help you provide both in terms of emotional and information wise is a credit to you . You have also given me some hope that maybe one day I will get a dx my neuro has also told me that I am to old to develop ms and I,m 50 !  Afer reading your story I now doubt the validity of that statement xx chris

[Siddy1]

I originally posted this under Quix's "What it took for a diagnosis of MS" and I have edited and shortened it.

Hi, I'm Marcie and this is my timeline diagnosis:

I think I was one of the lucky ones as my diagnosis was quicker once the weakness in my left side became apparent and TIA's were ruled out. Without the weakness I doubt if I would have a diagnosis.

In 1998 I started to notice little things at first and not all at one time but spread out over the next 5 years. Back pain, neck pain, vertigo (BPPV), legs aching more than usual. I experienced a sensation of falling for maybe 20 seconds when the room spun around if I looked up to the celing.  I had excruciating stabs of pain up the side of my ear/face which could be a single one or occur every 5 minutes or so for a couple of days at a time.

I had a couple of small mishaps which I did not put down to anything serious. I was climbing up a ladder and my leg just did not connect with the second step -it seemed like I was stepping on air and I fell backwards but I got up and carried on. Then I got out of bed one morning and my leg collapsed underneath me leaving me wondering what the heck was going on. Doctor(s) put it down to my lower back pain and a pinched nerve. I also had a very bad aching right hip. They reviewed X-Rays and MRI’s of my spine which showed narrowing at L4-L5. I had an MRI of my brain (2001) which showed one white spot (not explained to me at the time but later thought to be a TIA). My neck pain "resolved" itself by "spontaneous healing" as one Neuro said. That was a joke as I was supposed to wear a neck collar and never did - but it healed anyway.

I continued having hip/back pain until 2004. Had some floaters and light flashes and things going on in my right eye, leaving one permanent black spot out of my line of vision. The Ophthalmologist said there was nothing wrong with my eyes or eyesight.

In 1/2004 my left arm started to hurt when raising it above my head so I stopped trying to raise it. x-rays showed lucencies in the bone consistent with  "disuse". Eventually that pain went away and I was left with a somewhat weaker arm/hand.

In July 2005 I decided that because my left arm was getting progressively weaker and my left leg was going the same way, with pronounced footdrop I should go back to my primary care doctor to find out what was going on. . He thought I had another TIA. He referred me to a new Neurologist as mine had left Florida.  I was on Plavix which is an anti-platelet medication in view of the previous DVT so a bit of head scratching went on as to why it was not working to prevent TIA’s if this was indeed what was happening.

In August 2005 the new Neurologist saw me and after reviewing my medical history and current symptoms he diagnosed likely MS. He asked a lot of questions and did some physical tests for arm and leg weakness. I had an excessively strong left knee jerk reaction which is not indicative of me having had a stroke. He managed to pull out a long time forgotten memory of mine when I was 21 after the birth of my daughter. I could not physically get out of bed I was hurting all over and the doctor thought it was Polio. After a few weeks I was okay again. I can't remember being treated with any meds. Anyway, this episode was used by my present day Neurologist as probably being the first symptoms of my MS.

My new Neurologist wanted a second opinion from an expert in MS  but before that he wanted to do some tests as follows:

Full bloodwork to rule out everything possible, i.e. Lupus, Lyme, RA, AIDs, Syphillis (syphilis), etc. He said all blood tested normal.
VER -Virtual Evoked Response (eyes) - Nothing out of the normal
SPINAL TAP ( My spinal fluid samples were sent to two different laboratories. One result came back NEGATIVE for oligoclonal bands one came back POSITIVE for 2 oligoclonal bands. Showed exessive protein in CSF.
MRI - brain - Two  white matter  spots on the brain
EMG's inconclusive but not 100% normal
.
TREATMENT
Solumedrol for 5 days - not effective for me

Second Opinion from MS Specialist:

December 2005 - I was now using a walking stick and was sent to the other Neurologist who specializes in MS and runs an MS Clinic in Tampa. I was armed with all the test results, MRI’s, reports, etc. He put all these results together and, based on his experience, he diagnosed me with SPMS Secondary Progressive MS. The Neurologists always prefer to have at least one prior incident to dx MS so the early one in the 60's was deemed to be the “first”. It was also noted that a 2003 MRI showed variability and some resolution of previous lesions seen on MRI's in 2001 & 2002 which means my body was probably trying to repair itself but the demyelinating process could not catch up with it all. My MRI's (all were performed with and w/o contrast) in 2004, 2005 revealed atypical T2 signal changes more consistent with MS demyelinating and axonal processes than ischemia (TIA's or mini strokes).

Since my diagnosis in 2005 I have had very slow progressive weakness in my left arm and leg and have to be careful of tripping. My Orthopedic doctor is making me an AFO brace after this last trip and fall to help with the footdrop. The weakness varies in my left hand from weak to weaker.

09/15/07
The first diagnosing Neuro recommended Rebif which I declined because of side effects. After I declined Rebif the only thing he said to me on the phone was "well, good luck then". I found all the detailed copies of my LP and Blood tests and have all the MRI pictures here in my home.

I took LDN for one year with no improvement in my left sided weakness but I did get an overall sense of well being. I have heard that it helps MS sufferers with other symptoms such as bladder etc. but I guess I am lucky in that respect so far but I shouldn't speak too soon.

My LP might help some people in reading their LP results:


                                      NORMAL           HIGH                          
CSF GLUCOSE:
COLOR:                         COLORLESS        
CSF APPEARANCE:       CLEAR                                REF RANGE
CSF WBC:                     1                                         0-5
CSF RBC                                                     53*        0-25/MM3
CSF GLUCOSE               54                                      50-70 mg/dL
CSF PROTEIN                                              57*        15-45 MG/DL

The iGg synthesis  rate, CSF and IgG index, CSF are two formulae for estimating the amount of IgG produced in the central nervous system.  Evidence of increased synthesis of IgG provides support for the diagnosis of multiple sclerosis.
CSF PROTEIN                                              57*       15-45 MG/DL

Both the RBC and Protein were flagged out of range.  The far right gives the normal reference ranges of these tests.

CSF Albumin                    35.4                       8-42.0 mg/DL
Serum IGG                       962                        604-1618 mg/DL
Serum Albumin                 3.9                        3.2 - 4.6 g/DL



Marcie

[Siddy1]

In the process of getting everyone's timeline of symptoms in the same thread we now have two threads with  timeline symptoms of people already dxed with MS.

one is entitled  "What I Went Through to Get a Diagnosis   (26 posts  dated   7/14

and the other is entitled "What it took for a diagnosis of MS  (28 posts dated 5/24)

Some people have put their timeline on one thread as requested and some on the other.  Others  have re-posted both times.  I am assuming that the thread dated 7/14 is the one to look at and  I am bumping it up in case some people still need to copy and pase or re-post  their timelines on this thread.  It disappears off the front page very quickly.

Marcie

[innisfree]

My diagnosis was a long time coming, as I gather is too often usual. I am 54 and began having odd symptoms at age 17-18. I had sudden pain in my face and head with stiffened legs and overwhelming weakness. I had a lot of nonconclusive testing and a variety of trash basket diagnoses with emotional dismissal from many physicians over the years. I had alleviation from symptoms for years when I was having children. Lesions "that may indicate multiple sclerosis" were later seen by one neurologist who told me that it couldn't be MS because of the pain. I had a diagnosis of diabetes in 1999 and the neurologist at the time said that my spasms were diabetic neuropathy and ignored the lesions that he saw. I finally had a diagnosis of definite MS with a new neurologist on 5/24/2007 with so many lesions on the MRI that no other testing was done. I am on Rebif and a number of other medication to help with symptoms.

Love this forum!

[Quixotic1]

Thank you for your story!  Please would you write it up in more detail and post as a new Thread on the main page so people can find you, that is if you are willing?  How long have you been reading?  Quix

[innisfree]

I have only been reading for a few days. I am willing and it would probably be therapeutic for me to do so. It will have to wait for a while as I am running out of steam. I'll start it in the next few days as a Word doc. and save it as I go. I warn you it might be lengthy!

G'night, all!

[StayAtHomeDad]

My story:
In march of 2005 I had an episode of ON. I saw my doctor and was told it was probably allergies or sinus inflamation (inflammation). It was mild and lasted for about a week. Then, in May of 2006 I had a second bout with ON. This time I went completely blind in my right eye. I went through the MRI - they found 12 lesions - they said only two were big enough to count(like two isn't enough). I was given the solumederol for three days and then the prednisone for another 5 weeks. About a month after that they did a spinal tap and confirmed it was MS. About three months after the attack my sight started returning - I have regained about 70% in my right eye and think that is as good as it is going to get.

In retrospect I can pick out attacks that occured clear back to 1989. These included loss of use in my right arm for about ten days, an attack of optical neuritis in both eyes, many bouts with fatigue, a couple of issues with vertigo and a whole string of urinary tract infections. The docotrs always had explanations - pinched nerve in your back, maybe an inner ear infection, and their favorite catch all - stress or depression.

Since my diagnosis I have had two major attacks. One lasted about twelve weeks - I lost all sensation in my legs and arms. I lost my ability to think, and my speech was slightly garbled. My second attack left me with spacticity in my legs(minor at this point) and loss of strength in both of my arms(also minor). I now suffer from the two most common complaints of the disease - fatigue and heat sensitivity. I was originally started on Rebiff, then switched to Copaxone. AThe rebiff completely imobilized me. I was sleeping about 6 -8 hours a day plus my ful night of sleep. Further, I found myself going into a deep depression. The doctors changed me to copaxone and that helped with the fatigue quite a bit but did nothing for the depression. I then found out(from a local support group I attend) that depression is common in MS patients. My neurologist prescribed an anti -depressant for me. It helped a little. When my second attack came, she told me to double up on the anti depresssant. That made a HUGE difference. I haven't felt this good(emotionally) in fifteen years.

Anyway, I am still on the learning curve, trying how to deal with this disease and how it affects me and my family. I use a self affirmation every day - "One day at a time, one step at a time - and above all else always look for the positive."

That is my $0.02 worth,
StayAtHomeDad

[Heather3418]

Your .02 cents worth was good to read.  I am SO glad to hear that bumping up the dosage of the anti-depressant really helped.  Isn't it great to feel that good?  After all you have been through you deserve it...

Best Wishes...Would you mind giving us your first name or a short nickname...typing StayAtHomeDad is really hard on those of us that use the delete and retype key on every other stroke.....LOL

Heather  

[StayAtHomeDad]

Hey Heather,
I thought that StayatHomeDad would be a nice signature, but I am having issues typing it as well. My name is Mark - I use MArkH in alot of my other signatures. I'll see if I can find how to edit my profile and shorten my name. Thanks for the input.
MarkH

[Heather3418]

Thanks....

[Heather3418]

I like the StayAtHomeDad, as your signature...I wouldn't change that at all...can we just call you Mark sometimes?  That's all I meant...

[runningbarbie]

I started having my issues in 2000 a couple months after running a marathon.  Constricting feeling in upper left arm with my hand shaking.  Went to the doctor and was told to lay off the caffine.  When ever I would run after that, I would get about 40 minutes into my run and would get blurry and double vision.  Brought it up to the eye doctor during routine exams and he really didnt say anything about it.  2004, I had run a 18 mile race and got a cold right after.  Then the arm pain came back and numbness.  Then came the eyes, shaking right hand drunk like feeling, stumbling, vibrations in my legs.  All went away about a month later.  That it was my cold but the arm pain stayed.  Had an MRI of my shoulder thinking it was a pinched nerve.  All was fine.  2005 same time of year, same issues.  I ignored it.  2006, same time of year, this time went back to my doctor.  Got an MRI of my brain. Doctor told me it was clear but I needed to go to a Neuro.  Went to see him.  He said it sounded like MS.  (I am 34) Wanted to do another MRI of brain, neck, and spine.  My referral didnt go through so I went back and saw him again to make sure my referral would go through for my MRI's this time.  (one month ago).  He said how he thought that it was still MS.  I had had 3 attacks with this  year.  He also said that my first MRI the was a little spot.  ?????  Doctors drive me NUTS!!!!  So, Oct 31, I will be getting an Evoked Potential Test.  Nov 6 I will find out the outcome of the MRIs and EPT.  I have kept a log of how I feel and what I eat everyday.  I noticed my systems would come on with heat,stess, and illness.  My attacks were always during Nov/Dec.  These are months that are stressful, my diet is poor, and I am racing and spending a lot of time on the treadmill heating up.  I had an attack in the summer that was induced by the heat and stress.  I have found some things that help.  I continue my running for 30mins a day, yoga, I take a cool shower in the am, and one in the pm before I go to bed.  I also started a gluten,yeast, sugar, milk free diet.  I started that during my last attack and within days I felt better.  It was from a book Healing Multiple Sclerosis.  I got really tired of my doctors.  Mixed information, not putting my referrals through, and having a hard time getting appointments.  Dont know about you guys, but if I make an appointment with my neuro, it is for the following month which my attack is usually almost gone.  My left hand now goes numb sometimes during an attack.  I have a ball that I concentrate on squeezing when it is like that.  It does help. When I am just too dizzy, I do the yoga.  At least it all makes me feel like I am doing something proactive.  The diet I think has been the biggest help.  I have been on it almost 4 months and havent had any issues.  If you are interested, look up some other studies about gluten and MS.  I found that what it boils down to is ways of reducing inflammation.  I sometimes feel I what to know what this is.  And other times I feel, does it matter.  I am sure there are some drugs that help and have improved peoples lives but I feel I am not to that point yet were I have exhausted all my options.  I loved all your stories.  Some of you went through much harder times and I feel for you.  I see I am going to have a tough time with doctors.  I did not know you can get your medical records and films?  Should I be demanding these?  

[Heartshome]

Hello, I just found this site and it looks very helpful. I"m not sure that this is posted in the correct place, but feel free to move it or inform me if I'm wrong.

I am 48 and have been having strange symptoms for about 8 years. I was working at a very high-stress job and would notice that my foot would get numb after a stressful meeting. I shrugged it off until it started happening in both feet. I could feel things, but my feet and then my hands would get tingly and numb (like coming out of novacaine at the dentists) halfway up my legs and arms. My PCP sent me to a neuro who did all the blood tests to rule out the many other diseases, and an EMG which was normal. I had a MRI with/wout contrast and it was clear. He told me that lots of people have numbness and not to worry about it.  I blew it off and went on with life. a couple years later, it started bothering me again. My doc thought it might be Lupus, so off I went to the Rhem dr. who did a complete workup and told me I was fine. Hmmmm.  About six months ago, I noticed that the back of my lower legs had a perm. purple mottling on them. My doctor told me it was Livido Reticularsis, which is indiciative of an autoimmune disease. He thought that it was likely related to all my other problems.  Over this period, I had noticed a great deal of weakness in my hands. I had a hard time opening jars, dropping things, etc. The joints in my ankles and wrists bother me alot. Also, my short term memory is very bad, I have lost my ability to multi-task, and my cognitive abilities are noticeably reduced. I used to be a Advertising Exec.--I could never do that work again. I can barely remember my appointments! About three months ago, my hands suddenly became much worse. I had almost no ability to pinch my fingers together, or use them in a meaningful way. My balance became terrible and I was dizzy with a buzzing feeling in my head. My feet and legs felt very heavy, and I trip frequently when walking. I tend to drag my toes now and then. I had to touch the walls in the hallway to walk, going upstairs was diffcult, etc. I felt like I walked like Franenstein and my husband jokingly told me that I sometimes looked drunk. I went back to my doctor who did the neuro exam. My right foot reflex was bad (Babinski's?) and right leg was a bit stronger than normal. I failed the "walking the line" test badly. He tells me that I have something neurological going on but he has run out of things to test for. He believes that I am ill though and sends me for another MRI with/wout. He thinks I probably have MS. The MRIs come back clear. My blood work had a few little weird things, but not of consequence.  It appears that they have ruled out all the other nasty diseases that could be causing my symptoms, but since my MRI is clear, no diagnosis. My doctor tells me not to be in a hurry for a diagnosis, but it's driving my crazy not knowing what is wrong with me. Perhaps it can't be fixed, but what if it could be? So, I'm eating a very lowfat diet filled with natural, whole foods, resting, and trying to keep away from stress which sends me into symptom land every time.

Any ideas, input would be very welcome!

[nette573]

This is great info also!

[Quixotic1]

Some of the stories from members of the forum on getting their diagnoses.  It can be reassuring to know that others have gone through the same thing you are.  Quix

[shoshin]

My problems seemed to start in spring of 2001 (although in retrospect there was probably something going on before then). I had a really bad case of strep throat--I was out of work for a week and by the time I dragged myself to the doctor, they gave me antibiotics both as a shot and pills. I felt exhausted and like I had some sort of brain fever. When I was recovering from the strep, I started getting tingling in odd places, like my feet or the backs of my knees, for no reason.

When it didn't go away after a while and I couldn't keep ignoring it, I went to the doctor who sent me for an EMG and nerve conduction test (normal) and then to a local neuro. The first thing out of the neuro's mouth was MS because of my age (31 at the time) and gender (female), but when the MRI's (brain, cervical and thoracic spine) came back normal, he said it wasn't MS, but idiopathic peripheral neuropathy.

It kept gradually getting worse. Feet became somewhat numb all the time, some burning sensations, spread to calves, got tingling in scalp and face, fingers numb and clumsy, some numbness in arms, eventually thighs. Mostly tight or pressure-y sensations and numbness; knees and fingers feel stiff; legs feel hard. Sometimes tightness in abdomen up to ribs. Lack of coordination and I feel like I am weaker (although this doesn't seem to come up on the tests). My balance has gotten worse. I've fallen occasionally when not paying attention and have to hold onto the railing when going down stairs. I get tired easily and have less endurance.

Except for one incident several years before the strep throat (which was sensory and seemed to resolve completely), I haven't had anything that I would call a clearly-defined attack or remission. The symptoms wax and wane a bit, but nothing happens suddenly and things seem to be gradually getting worse. I can't remember anymore what it was like when my legs and hands felt normal

Anyway, the local neuro didn't seem to think anything was getting worse based on his exams so after a few years I got second opinion from a neuro at the nearest university. The second neuro also said idiopathic peripheral neuropathy, probably autoimmune, and not likely to get worse.

Except I felt like I was getting worse, like the frog in water that is slowly being boiled and doesn't realize it until it's too late to escape. Over time I sort of vacillated between denial and panic. In one of my more panicky moments last June, I went back to the local neuro who told me I had "hypersensitive nerves" (which for all the world sounds like some sort of 19th century women's hysterical disease, although I'm not sure that's what he meant) and my exam was in the "normal range." He said he could send me to a specialist who would do all sorts of expensive testing for genetic conditions that can't be treated (which he implied was a great waste of time and money) and gave me the impression that I should stop making mountains out of molehills.

On the web, I had come across a place that specialized in peripheral neuropathy and  thought that was worth a shot because the idiopathic thing drove me crazy and I couldn't reconcile my subjective experience with what I was being told about "it's not getting worse and it's not likely to get worse." I went back and forth over this--after all how many doctors do you go to see just to have them tell you the same thing before you believe them? In the end, I got an appointment with a PN specialist in August who said first we had to show that I had peripheral neuropathy (at the time I thought the alternative was some sort of psychological problem). I had an exam (I don't know if this neuro thought I was normal or not), a normal EMG, and then a somatosensory evoked potential (SSEP). The SSEP as I understand it measures the speed of the nerve signals from the time they hit the central nervous system (spine) until they reach the brain. Anyway, this was abnormal (legs and arms) and the neuro told me I had a problem with the central nervous system and he didn't think I had peripheral neuropathy at all. Despite the fact that the central nervous system sounds much worse, I was stupidly happy just to have something objectively proven wrong, especially something that jibed better with my experience.

After that I had a brain and cervical spine MRI. There were three non-enhancing lesions on the spine. The brain report came back clean, but my neuro looked at the pics and said he thought there were two "small spots." I then had a spinal tap, which was positive for 13 o-bands. I also had a slew of blood tests, etc., which were negative.

So the PN neuro sent me to an MS neuro, who concurred that I have MS. And that's where I'm at now.

[thester6474]

Problems with the following:

* Memory – if I do not write down reminders I will forget to do things, half the time, I forget about the reminders.
*Concentrating – I find myself drifting off into la-la land during ANY AND ALL situations.
*Thinking clearly – over medicated??????
*Dressing, can only dress while sitting down, unable to pick legs up, but so far off the ground
*Walking – depend too much on right leg, tire and cramp easily, unable to put much pressure on either leg, even less on left leg, have to stop and rest after every 15 – 20 yards (EXPERIENCE EXTREME PAIN AND FATIGUE)
*Difficulty falling asleep, urinating, swallowing, picking items up, gripping items, buttoning attire, standing *Harder time will small muscle activities, such as turning pages in books, opening jars, wrappers, etc.
*Doing Daily Tasks – items that require little or no common sense, mailing items, organizing things such as appointments, labs, and DIRECTIONS (especially oral).
*Difficulty coping with STRESS, HEAT AND NOISES!!!!!!!!!!!!
*Inability to feel when injury happens

Other symptoms include:

*Burning pain (in muscles) – moderate to severe, lately severe
*Pins and Needles Feeling
*Numbness
*Decreased Muscular Control
*Stiffness – PT has really helped this, for days after pt, I feel less stiff...stiffness makes is hard for me to dress
*Swelling – worse in back, feet and legs
*Fatigue (Mental & Physical)
*Malaise **** – A daily problem with me anymore, I do not know if it is because of depression, the pain, weakness, or the abundance of medication I am taking.  
*Depression – taking Nortriptyline 50 mg and Cymbalta 60 mg daily
*Headaches – (Migraines???) worse around loud noises and bright lights
*Irritability & Anxiousness
*Tingling Sensations (allodynias)  – for example during bathing, walking, sitting...anytime my leg is near movement or I put pressure on it, worse with my right side?!? Worse when laying down or when putting pressure on the right leg, foot or knee
*Low Grade Fever, results are hardly ever under 99.6
*Shaky right hand – Intentional tremor ???
*Proprioception – loss of position sense – I can barely tell where my leg is placed if I am not directly looking at it.
*Major Cramps and Painful Spasms (severity worse than Charlie horses)
*Dysesthia – Inability to feel when injury happens, for instance I can get cut, scratched etc, and not feel any pain, that is unless I see it
*Chronic Urinary Tract Infections – from urinary retention????
*Feeling faint and dizzy when rising from a sitting position
*Bothered by noises and lights (Could Anti-Depressants be causing this?)
*Back pain
*Muscle weakness – Especially in extremities
*Dystonia
*Symptoms severity increased with heat
*Body can feel heat or burning without any apparent heat near body (sense of touch may be replaced by feelings of numbness or tingling. Parts of your body may feel burning or cold, even though there is no heat or chill present.)
*Constant state of tiredness – inability to complete most tasks –  moving or lifting items, exercising,   walking, carrying grocery, brushing hair, etc.
*Extra tension in arms and legs with usage.
*Chronic Indigestion
*FRUSTRATION
*Positive Babinski Reflex (only in right side)
*Inability to feel and recognize touches, unless they are visual
*Spasticity -- Increased a great deal in the last month
*Thickening of the skin -- Increased greatly in the last month

I am currently being seen by a Neurologist, having MRIs and Spinal Tap done.  I am so worried about the spinal tap, I have almost decided not to do it, what can help me decide to do it?  What disease would you be more worried about?  What would these two tests help to determine?

[gooddays]

I was dx in 2003, after 12 years of multiple tests, multiple diagnoses, a lot of money spent on specialists and nothing was working.  I remember that when I was in my teen age years, I was very clumsy and often would have a bout of double vision or no vision at all in my left eye.  The doctors said that it was hormones activity.

I am a very hyper human being, but this was slowing me down.  In 2003, I wss completly paralized from the waist down, and with help from angels, went to see my neuro who diagnosed it as a pinch nerve in the lower back.  Sent home with painkillers, but nothing worked.  After having 12 years of tests with normal signs and visiting 6 neuros, one of them iss supposedly the best MS physician in the island, not for me.

I work in a place where stress is contant, needless to say, I have many relapses, been in the hospital about 4 times with steroids and started using Avonex three years ago.

I finally visited a young physician (neuro), who listened to what I was feeling and not only that, she finally diagnosed me relapsing remitting MS.

This year has been very active in relation to relapses,  I would have one every three months.  Back to  steroids intravenously and a lot of medication for balance, fatigue, PAIN and most of alll, my left eye seems to run my entire body.  It has always started with double vision, I had have to wear eye patches for several occassions in order to lead an almost nomal life.

I have been fighting with monster for so long that I am tired of being sick and trying to cope with everything else involved.

I always say that the Lord knows why I have this disease.  I think that it is a humbling experience so that I would know that I am not alone in my quest for a healthy life.  There is always someone who is worst than what you have, so life goes on.

By the way, I use a cane constantly because of my double vision, tremors and spasticity.  I had a prescription for a motor scooder, and it is sitting in a corner of living room  I know that if I start using it on bad das, I would be using it very frequently.  I do not loose my faith and hope that a cure will be found soon,

This is my first time writing in a forum, I hope my story can be of help to at least one person.

Good luck every with whatever treatment you are on and do not give into the disease.  We have MS, but MS does not have us.

Gooddays

[Quixotic1]

We are honored that this forum motivated your first post.  You have been through an amazing ordeal and I can only imagine your relief when someone finally put a name to what you knew was wrong!  I don't know if you stumbled across us or if you have been reading along.  But, the secondary focus of this forum beyond MS is the horrible and unbearable time between knowing that something serious is wrong and finding a name for the enemy.  A great number of us struggled for a long time for real information and for the name. Many are still stuck in that Limbo Land.

Thank you for adding your story.  Your strength is inspiring and your story needs to be told.  If you would be willing, would you tell your story again, myabe adding your age and some of the testing you had through the years that failed to give you an early answer.  If you would go to the main post page on the forum, by clicking on the blue button (Back to Forum) at the bottom of this page, the choosing the blue button near the top (Post a Question).  You can cut and past what you have written here, or tell us another part or whatever you choose.

You will help far, far more than one person.  There are dozens who post here who still lack any knind of diagnosis and fight the despair that comes from not knowing.  For everyone here I suspect there are 100's more who read, but don't write.  

Thank you again, and I pray we'll see more of you on the forum.

Quix

[Quixotic1]

This is our ongoing thread of the complete stories of those of us who have diagnoses.  I'm asking that everyone who is willing add their story.  ALL the stories are important!  They give us a lot of our common ground.   They give those people without a diagnosis hope and show them that often an answer needs perseverence.  There are a lot of people missing from this list, so get to it!

At the start of this thread I ask for people with a diagnosis of MS.  That was short-sighted of me.  The story of suspecting MS and getting another answer is every bit as important.  So, let's hear from "everyone WITH a diagnosis."

This thread was started a few months after the forum was created, so it gives a little of our history.  MedHelp is blown away by the quality of the people and their interactions on this forum.  Reading this, you can see why.

I hope to see a lot of additions.

Quix (Momma Bear and Den mother)

[Rena705]

Limboland from He**...that is what some call it.  I was diagnosed with MS in 1993 after presenting with Grand Mal Seizures.  I was started on the anti-seizure medication and have been seizure free for about 11 years.  My disease, I have been told, was in remission ever since.
In Feb. 2007, I was diagnosed with Paratrigeminal Neuralgia which is related to the brain but has no association with MS, so I have been told.  In June 2007 I began having difficulty with pain in my hands and legs, paresthesia, vertical double vision, slurred speech, difficulty with word retrieval, nerve pain in my heels and swallowing issues.  The” MS Specialist” that I saw from Feb. 2007 until Nov. 2007, had a CT Scan done, x-rays of legs and hands and an MRI of my spine and pelvis which was due to pain I explained to him was due to a lumbar strain.  He was sure that there “may” be a tumour and therefore insisted on it...”it” cost me $1150.00 and all tests came back normal.  He constantly referred to the CT Scan that he did in Mar. 2007 as an MRI and we couldn’t explain to him that he was mistaken...in his mind he never is mistaken.
In November 2007, I was struck with severe vertical double vision.  I went to the ER and a CT Scan was done...normal.  They took blood to test for the levels of medications...high normal.  I was sent home and told to call my neurologist.  I called the “MS Specialist” and was told to try to see my G.P.  and have her try to get my “emotions” under control...I was essentially being called a hysterical female for going to ER about my vision!  The vertical double vision lasted 10 days, on the 11th day I finally was seen by my “MS Specialist”.  He began searching through my file, I asked what he was looking for and he responded he was looking for my MRI report!  He had not done an MRI in the time I had seen him from Feb. 2007 to Nov. 2007.  He ordered one and miraculously I was able to get one in 3 days and my healthcare paid for it.  I received a call from my “MS Specialist’s” NURSE,  two days later...my MRI is positive for MS and I was advised to obtain a second opinion!
I had an appointment with a new “MS Specialist” in Dec. 2007.  I went in very hopeful...that hope was squashed very quickly.  This “MS Specialist” very quickly determined that the symptoms I am having are due to being over-medicated by the last “MS Specialist” and if they get my medication under control I will be fine.  She has stated that “your disease is inactive and therefore I am not going to start you on the Disease Modifying Drugs.”  I am still on medication for my symptoms and have tried Tegretol, Topamax, Neurontin, Percocet, Oxycodone, Lyrica, Amitriptyline and next on the list to try is Cesamet.  I am told that my symptoms are not related to my MS however they do not know what they are related to.  I have an appt. to see a Rheumatologist.  I am to have neuropsychological evaluation.  I have been told to apply for a disability pension and the reason for it has been stated as MS and Fibromyalgia.  My disabled parking application was filled out by my G.P.  stating MS and Fibromyalgia as the reason for needing it.  HOWEVER, my disease, they keep telling me,  is inactive???  

[luverofrogs]

Thanks again for finding this thread and bumping it up for me:o).

[willowwoman7]

I relize now that I had my first symptom in about 1985 when I could not stand one day and was stuck in a chair for about 3 hours. Then, for weeks after that, my legs felt like lead. GP told me it was nothing and if I stopped smoking it would go away. That was the general pattern for a long time. Dizziness, tried treating me for anxiety. All the male docs I consulted assumed it was stress. Until 1995, my then doc sent me for an mri, but it was clear so he dx'd me with fibromyalgia. Then in 2000 was dx'd with a vry rare autoimmune kidney disease. Last year switched to a wonderful woman doc who on the first visit, knew I had lupus. Sent to rheumie who confirmed it with blood work. In July, had episode of horrible eye pain and numbness right side of face. Doc sent me to er incase of stroke. ct scan ok. Happened again.

My daughter and I were watching mystery dx on discovery and detailed a woman who was dx'd with lupus and turned out to be ms. Next episode of numbness in face went to doc and told her about the show. She said, "You do have a lot of symptoms of MS" and sent me immediately to neuro. He ordered MRI. Didn't expect MS because I was 51. Surprise.

My MRI: "white matter lesions that were at least 0.5 cm in diameter, often more, and that were perpendicular to the long axis of the ventricles. They also involed parts of the corpus collosum"

I saw it and it looks like swiss cheese. I am high chemical sensitive from the kidney disease, so I can't take provigil, or other stuff that goes through the kidneys.

Symptoms: I use a cane, I get dizzy, walk slow because afraid of falling, burning in all different parts of my body. Awful pain in lower back, legs and feet. Ear pain, my eyes are getting blurry. When under stress, my speech slurs and not unusual to lose words. When I gotta go....I gotta go. My hands and feet swell with the heat. I drop things. I get what feels like one huge muscle cramp from my mid back to my ankle that is excruciating. Forgetfullness, heat intolerance, etc.

I go for a follow up MRI next month.

Am on copaxone for 4 months. Don't see a difference, but I may be in secondary progressive now.

[bellalee]

I am a 25 year female, and really want someone to let me know what they think.

I am in the midst of that 'strange land / limbo land' that is spoken of. In May this year (2008), one day i woke up with a numb L big toe. Thought nothing of it. 4 days later, sitting on the couch, was feeling it and realised it was now in my second toe too. The next week i went to my GP who unintentially 'began my deteriation of my once strong mind into a depressed and pessimistc state'. This week i started to get weak muscles in my left side.

Neuro app came, MRI apparently normal from the report by he said there were some very questionable areas but not to worry about it. "It is a virus which should get better soon"

The next 2-3 months, I started suffereing from virtigo. I would be watching TV and could follow the movement of the screen properly. I had constant burning sensations in my legs and arms, pricking sensations all over my body, very achy muscles in legs, extreme fatigue.

I heard that ppl with MS are heat intolerant, so to test this out, ran a very hot bath. That night was awful, couldn't raise my arms properly and felt generally sick. VERY ANXIOUS

Numbness never went away, in fact still numb now. One morning i woke up with L side of body numb, including inside my mouth. Lots of muscle twitching, including my tongue which was strange.

Last month, i was so depressed, i couldn't cope with going to work as i was adement (and still am) that i have MS. Crying all the time. Mum was upset about this one night and rang GP for advice. Got into the same neuro again in the next couple of days.

Neuro thinks i'm crazy. I real feeling that he thinks i'm making it up. Ordered another MRI, LP and evoked potential.

This was 2 weeks ago, LP normal, evoked potentials normal, 2nd MRI came back with a report saying i had 10 insignificant T2 lesions on the brain (not typical of primary demylination) and a possible subtle high signal of T2 hyperintensity on the spine, but not a definite finding. Neuro still thinks it is a virus (which one i dont know) and is telling me my anxiety might be causing the symptoms. By this stage symptoms eased and i felt ok however this week starting to feel prickling sensations again and burning sensations.

What sort of virus is he talking about?? Does anyone know?? What does everyone think i should do?

PS - i'm going for a 2nd opinion in 3 weeks.

Belinda

[Lulu54]

I found this thread when I was looking for something else - I hope all who are dx'd will take the time to add their story to the ones already here. I promise I will work on mine, too! :-)

This is well worth the read so you know you are not alone.

be well,
Lulu

[jpeg11]

I wish I had seen your post about the Mayo Clinic before I wasted my time and money.  If you want help, that is not the place to go!

[Granny1065]

I have just come across this forum, whilst reseraching how to get a diagnosis.  I have suffered with migraines all my life and approx 2 years  ago began to have regular headaches evey day.  These were not my usual migraine headaches although I was sensitive to light have numbness in my face and disturbed vision.  I am a teacher and tried to persevere in going to work and dosing up on painkillers.  I found I was extremely tired and had strange sensations down my left side.  I went to my Dr in Easter holidays and he prescibed me stronger pain medication.  I saw him regulary for a couple of months.  At one appt. I was exhibiting the symptons and he sent me to hospital to a mediacal assessment unit.  Here I has a CT scan and a chest X-ray.  The CT showed I had more fluid than usual but not abnormal and chest X-ray clear.  I was then referred to a Neuro.  This took 3 months to get an appointment.  She prescibed beta-blockers for my migraine headaches, I had severe wheezing as a reaction and was taken off of them.  I had a follow up appt which she said I had tinnitus and urinary problems were due to having hysterectomy 25 years ago!  Also my migraine symptons had changed after 40 years!  I returned to my doctor and told him of my increased tiredness back pain urinary urgency and lack of being able to go and a numbness down one side of this area.  He examined me and sent me to hospital for a scan at accident and Emergency.  There 2 doctors examined me; 1 said I should have MRI and the other said there was no surgical reason to have one.  I am still off work to the detriment of my students and colleagues. My employers are questionning the amount of time off I am having without a firm diagnosis of what is wrong, and I am here in limbo land.  Reading the other posting I can associate with a lot of the symptoms and forget to list them when attending dr appt, feel like I am wasting their time and just moan about everything all of the time.  This time 2 years ago I went swimming once a week walked my dog with my husband went camping did activities on the Wii and other computer exercises and games.  Now I sleep twice a day find standing in the shower difficult, walking upstairs exhausting, planning my lessons and orgainsing my colleagues in the department difficult to keep track of.  ~All in all fed up and depressed seeing the career and life that I have built slipping away from me.

I do thank all of you who have shared your stories they have given me hope and a determination to address these issues with my dr at the next appt in4 days.  Thank you

[kerrtelli]

Hello All,

My MS journey started last march.
It started with spasms in my calves at night.
Then the spams started coming in the daytime and I was getting more tired than usual.

I started having tremors and one day it all hit the fan.
I was working and my principal noticed that I was really out of it.

I was having trouble finding words, thinking straight, walking, etc.

Went to the ER and the ER doctor thought something was up so she called in the neuro.  The neuro came in, did an exam and said I was fine.

He said that my problem was from a recent raise in my Concerta.
The ER doc thought that was ridiculous and admitted me for testing.
The only testing they did was an ultra sound n my legs to see ifs had blood clots.

Two days later I was sent home with a walker and no diagnosis or explanation.  They released me with a diagnosis of unsteady gait.

Time went on.  I stayed home from work for a week because of the walking problems and fatigue.  I was in a flair and didn't know it.

I continued to work and my mobility got worse.  Started using a cane.
I went to see an ms specialist and he told me that from my exam and from my MRI results that I most probably had ms.

I thought this is great.  He sent me for an MRI of the brain and a c-spine.
Six weeks later i went back to see him expecting DMDs and he said that looking at my MRI's that I didn't have ms.  He said that although I has more than 23 lesions on my brain they weren't exactly what they normally see in ms.  He sent me on my merry way.

During this time. Was getting worse and had little fairs of speech problems, fatigue, etc, etc.

Went to see another neuro in Bridgeport, ct.  He looked at me and said that I either had ms or depression.  He said that my exam was strange.  He insinuated that I was faking it.  Either way he said he was going to have his brother look at my MRI's and let me know what he thought.

Two weeks later we go back and he says his brother said its not ms.  So he said I should see a psychiatrist.  

I had been seeing the same psychiatrist for five years for ADHD and anxiety so when I went to him and told him what the neuro said, the psych said the neuro was crazy.

Either way life goes on, I go back to work after the summer and have another rflair in October.  It presented itself as a stroke and I went to the ER becauseithought I was having a stroke or seizure.  I am still hobbling around with my cane but at that point I had given up on getting a diagnosis.

The ER doc calls the neuro.  The neuro comes in, different guy from the last time thank god, and says I am admitting you to find out what is going on.

He has me scanned on a 3T machine, I have three spinal taps, on seizure protocol so I can't get out of bed.

He comes in one day and says you have ms, and I am starting you n solumedrol.  He also said in two weeks I am  to start you n copaxone.

Sconce then I have moved from the cane to forearm crutch.  Had to stop working and saw the pt who said I have to use both crutches because she is afraid I am going to fall.

This morning i tripped coming out of the YMCA where I do an ms water aerobics class.  Good thing I listened.

That's my story.  

Kerri

[JaneK1975]

Hi. I’m Jane, and I am one of the lucky few who did not have to fight for a diagnosis. Looking back, I understand that it took years for me to be diagnosed, but I was the last person to realize I had a neurological problem rather than the first.

In 2004 or 2005, I had an episode of numb/prickly face. It came on slowly, starting at the tip of my nose and spreading over the entire right half of my face. I didn’t have health insurance at the time, so I went to a clinic. The doctor there told me she had no idea what was going on, and suggested that I try taking Ibuprofen for two weeks. I did, and the numbness slowly went away.

In 2008 I had a horrible bout of vertigo that lasted a little over a week. This time, I had health insurance but no regular doctor, so I looked up a local ENT. The ENT asked me if I had been sick recently and I told her that I had recovered from a cold a couple of weeks prior. She said that the virus had probably creeped up into my ear. She suggested I take meclazine and allergy medication for a couple weeks, but said that I would probably just have to tough it out. I did some internet research at home and found that vertigo can be a symptom of migraine, so I told myself that the vertigo was part of the migraines I have suffered ever since I was a teenager.

In early 2011, I fell going down the stairs from my apartment. Although it was a really bad fall, I wasn’t hurt. “How lucky”, I thought. A few months later, I fell again. Everyone told me I needed to be more careful, but I blamed the stairs for my fall (both times it was raining and the tread was slippery). I asked my landlord to install grip tape, and he did.

A few more months passed, and my left arm started to feel strange. It was aching really badly, and my thumb was numb. I couldn’t pick up small objects or play guitar anymore. I went into my GP and he asked me if I had fallen recently. I told him about my falls, but said they had been so long ago and I had no pain afterwards, so I didn’t think they had anything to do with my arm. He felt my back and said my muscles were “hard as a rock”. Then he prescribed me a pack of methylprednisone (steroids) to bring down inflammation, which he thought was causing a nerve to be pinched. He also sent me to physical therapy.

The physical therapist told me I had horrible posture (which is true), and gave me shoulder strengthening and posture correction exercises. At first, my arm got worse and every afternoon I had almost unbearable fatigue (which I assumed was a side-effect of the extreme pain in my arm). I dutifully took my my oral steroids and attended PT, and in time the pain and numbness subsided.

When  my 8 sessions of PT were up, my arm was feeling much better, so I assumed it was just a matter of time before it went back to 100% normal. But the week following my last PT session, I woke up to a completely numb left hand. I also noticed that when I looked down to button my pants, a strange sensation buzzed down my arm. By this time, I really believed I had  a pinched nerve from the falls. I called my GP again and he referred me to an orthopedic surgeon. The orthopedic surgeon spent five minutes with me and decided to refer me to a neurologist. At home, I did some internet research and found out that numbness can be a sign of MS. I told my boyfriend, “How weird would it be if I had MS?!?!” We both laughed.

When I saw the neurologist, he asked me some questions about my symptoms and scheduled me for an MRI of my c-spine. When he called me to go over the results, I thought I was going to have to decide whether I should have surgery on my vertebrae to fix whatever was pinching my nerve. I was completely surprised when he told me that my vertebrae were lined up perfectly, but there was a lesion on my spinal cord that looked suspicious for MS.

Over the course of the next six weeks, the neuro sent me for more MRIs (brain and spinal cord with and w/o contrast), a visual evoked potential test (which came out normal), and a lumbar puncture. During those six weeks, feeling returned to my hand, but my feet and genitals went numb. At that point, I started putting it all together. I looked back through my twitter account and found an old tweet blaming a “two-day hangover” for my lack of gross motor skills. I had completely forgotten that I had been having trouble walking right before the arm numbness began.

The LP results clinched my diagnosis, which came on 12/27/11. I start Copaxone next week. I feel like I was diagnosed early and quickly, even though my symptoms started years before my diagnosis.

[Jessicab1978]

I am 33to years old with four kids.. My pain began when I was young and many doctor visits later I still come up at a dead end. I was diagnosed with optic noritis and was told it's an underlined problem. I did some research myself and really believe I have Ms I stay in pain my left side is numb most of the time I get electric shocks in my neck siatica no bladder control Im tired all the time and my hands dont always work I suffer vertigo badly and have recently started to loose my balance and have knee problems I also have HS ( very bad cyst) that I have learned go hand and hand with autoimmune disease. My problem is getting diagnosed I do not have insurance and I'm falling apart fast. I come home from work with purple swollen legs and cramp so bad I also get twitching in my eye that will last a long time and for so long I have written it off to just normal aches and pains everyone has because of the Drs not finding anything. I am at my end and don't know what to do every clinic Ive gone to refers me out but with no insurance whos gonna help me get diagnosed. If anyone has any ideas I am open I feel like Im running out if time and wasting my kids life growing up.

[find_me_again]

while waiting for a dx you feel as if your life is slowly being taken away. the person that was once 'you' is no longer and all that is left is a painful memory of that person you so badly want to be again. i literally seem to have every ms symptom tthere seems to be, even had a 'stroke' like episode consistant with those in ms. severe bladder issues my ureologist diagnosed as 'neurological.' the 'fatigue' (hate calling it that because at  this point pray for the normal fatigue) is so much more than just being tired-it's really quite indescribable. i hate sitting still always have. if i found myself with nothing to do i would create things to do. love cleaning my house and take pride in the way it looks. playing basketball with my kids, gardening, and love to do my hair and put make-up on. going for drives just to 'see' the world and be social-thats who i ised to be-have tried with everyting i have to find that girl again but she is gone, lost in a world of uncertainty.

[find_me_again]

but, as the story goes, i only have one T2 hyperintense focus in the right frontal subcortical white matter which was not there 7 mos. ago. my neurologist  said ms is possible but brain mri is not bad enough for a spinal. i have had several 'attacks' and am breaking down inside. i can literally feel myself falling apart and want my neoro to WAKE UP so i can do something with my life. i have had so many other drs (er and friends that work in medical field) tell me its obvious i have ms even a good friend that has ms has said 'i didn't even have as many symptoms as you do' i just want to 'find me again'

[Lulu54]

Welcome.  You may not realize that this was a very old post and many folks here won't take the time to read your intro.  I hope you will start a new post and reintroduce yourself with the details.  Welcome again, Lulu

[meg321]

That was confusing, I usually don't read dates and they were very long posts.
I don't have much to say now, it was too tiring..lol..

meg