Multiple Sclerosis Community
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147426 tn?1317269232

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.

79 Responses
Avatar universal
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.

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.

228463 tn?1216765121
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

228463 tn?1216765121
Sorry I moved things around and forgot to delete.  Proofreading with no memory can be dangerous!
Avatar universal
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.
230017 tn?1189759428
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)
228463 tn?1216765121
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!

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