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What it took for a diagnosis of MS
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What it took for a diagnosis of MS

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 had a couple weeks of a weird sensation of warm water running down my right thigh.

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. Ya know, the vertigo had been quite enough....

I'm now two weeks into therapy with Avonex.  I'm in a new relapse (my fourth in the 30 months) and just had another 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.  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 lesion that presses 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

Any comments? Later I'll try to list some of the things I've learned from all this. Quix
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Sorry to hear that it took so long for you to et the correct DX.  As I posted to Jen if you get a really good neuro they can tell just by giving you the once over in their surgery.

I have Provigil also, the problems I have with that is that when I do take it I find that I am whizzing around for the day, but the problems are always worse the following day because I have done too much the previous day - so I try to stay away from it as much as I can.

I too had the new MRI machine and it's quicker and more efficient.  Everything was put on a CD ROM so the professer could see exactly what was going on.  I had the head and spine done and it only took 45 mins - not too bad - but I did refuse the contrast due to the side effects.

He recommended for me to take Copaxone, as the side effects only last for approx 20 mins and then it's over, he said that with Avonex taking it once a week tha by the end of the weekly shots the drug has started to wear off and so it would take much longer to see any firm results, with Betaferon and rebif he said that I would feel like I had the flu all the time - so that was knocked off the list leaving me Copaxone.  He also said that I could take the new pill form if I wished - I declined that as if I am going to have any side effects I would prefer to have them straight away as opposed to waiting for a pill to disolve and the wondering whats going to happen.

I must say that he gave ME the choice of which drug therapy I would like so after my research I selected Copaxone as my best shot (no pun intended).

I am sorry to hear that your feeling so bad - I do know of a very good website where MS people can chat - my email is on Jen's post if you woud like it - I'm not sure if you are allowed to post links here - so drop me a line if you would like it.

There is also research going on into doubling the shots for Copaxone - it has been proved that people with secondary progressive are showing improvements - that would be good for you?

As for the age I know of someone who has been dx with MS at 73 so sayiing that you are too old for a dx of MS is like you said a crock!!!

Take care Quix,

Debs
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Hi, I reread what I wrote last night and it came out all wrong.  That's twice! that I have sounded harsh when I just meant to be responding.  What I meant to say is that I came across a lot of variability of side effects when I read about the vaious meds.  I did not mean to put your doc down, if I sounded like I was.  Also it is clear that different people react differently on each of the drugs.  I have spent a little time on some MS boards (before I was diagnosed, but worried ) and I heard them discussing who had reacted well and badly to the different meds.

I have read each of your posts eagerly.  You are so even-minded and pragmatic and knowledgeable.  I am still in the tumult of "knowing" facts and stats and of "reeling" from the implication of what's happening to me.  I hope we can keep talking.

Jeanne
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Yes, I selected my own therapy.  What I learned from the medical studies does not agree with your doc's Black and White  asessment of the side effect profiles.  Also a big deciding factor for me was the incidence of developing neutralizing antibodies against each of the drugs and the implication that had for further options if the one you are on quits being effective.  

In the end, I'm not sure it will matter for me.  I hope I do have RRMS, but I have had progressive disability with and without the relapses.  I think there is a good chance none will be effective.

I'll look up the link you gave jenn.  I'd like to talk with others who are early in the game like me.  So far in real life I've only met women who've had it already for 10 to 20 years and have little disability.  They've gone years between relapses and mainly had sensory symptoms.

Talk later , Quix
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Your story is all to familiar.
At my age of 41 was properly Dx'd in December,they kept telling me it was my age that people of my age don't get MS.
Neuro didn't take into consideration that I had optical neuritis and lumbar myelitis 7 years earlier.Precursor for MS.
I have been on rebif for 4 months now and some symptoms have left,but the waiting period for a DX has left some permanant disabilities.But at this point they are tolerable.
Even though I was on the rebif I relapsed in march and had a 5 day hodpital stay.
I'm in relapse no# 2,but hoping in time that the symptoms will slow down.Gonna start another round of steroids soon.

I have been left with more motor dysfunctions,but also have constant numbness in right foot and have had a severe burning sensation on the right side of my rib cage to where I don't even want to where cloths.
I get electrical shocks from the mid spine down to the feet and they can hurt,

I;m glad you found a neuro who new what he was dealing with.
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Hi!

I know what you went through.I too am in "limbo" and am still waiting for a definite dx.

I am in the middle of my 4th flare in 4 yrs and my primary dr tells me she still thinks it is MS.

BUT....

I have been seen at a MS Clinic many times and they tell me that no,it is not because my MRI's are all normal.

I am very frustrated because I am basicly stuck.

Meanwhile,my symptoms are getting worse and now I have to use a cane again because my feet are too heavy to walk right.

Why do Dr's think that a positive MRI is the only way you can get dx'ed?

I meet all of the criteria except for that...:(

Rhonda
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Hey Jeanne,

Sorry it's taken so long to reply, been a bit under the weather and very nervous at the prospect of going into hospital tomorrow for my first bout of steroids.  I have refused all forms of meds up until now because of the side effects - but now after having MS for 7 years now it's time.  I have lost the vision in my left eye due to diplopia and now I am having another relapse with my right eye.

I chose Copaxone mainly because of the lesser side effects - I have a 4 year old son (long story - blame Provigil for that - another side effect is that the contraceptive pill is useless when you take it).  So if it is true what the pharmas say and that the side effects last only for 20 mins then that is my drug of choice - keep you posted on that one :)

You didn't sound harsh, I know what it feels lke sometimes things just come out not quite the way you meant them to sound - I do it all the time.  I just say "oops just having another MS moment:)"  So I guess what I'm trying to say is that no offence was meant and no offence was taken.

The link that may well help you is mswebpals.org - it's a place with PWMS go and talk - it's really helpful and supportive.

Talk later - if you do go into the chatroom let me know your nickname OK??  there are people there from all over the world, and there is usually always someone there to talk to.

Debs X
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I got my newest MRI results today.  No active lesions, but 2 lesions in the medulla (brainstem), 2 in the cervical spine, and 1 or 2 in the thoracic spine.  I thought I would be pleased, but I'm just pissed again.  I don't like this disease.  I want to send it back!  Who do I complain to?  I want my money back (did I sign a contract?....)  :(
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I'm bumping this up to the front so that newcomers can read our stories and that some of our newly diagnosed people, like Katrina (karzme) and JonM can add their stories.  Quix
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Thanks so much for sharing all of this. I am kind of in limbo right now, wondering what to do next. I am 44. I started "mild" Optic Neuritis in May along with major fatigue, odd sensations, and a feeling that my right leg was disconnected. Not numb, but not mine.

My brain MRI report confirmed the ON and showed on new and one old spot in the white matter. The spots were reported as demylination by the radiologist, but the neurologist felt they were from high bp, which I do have but has been controlled by meds for years.

Her exame was very brief. I am wondering if that is due to my age and the fact that the eye doctor had already told her he felt the spots on my MRI were due to bp or a virus.  Not sure. I didn't realize I was sick with a virus!!

Anyway, when she did the reflex test on my right knee I about jumped off the table. It was painful. My right foot almost seemed like it had no reflex at all. She tried to get a babinski reflex on my right foot and got nothing. My left leg acted fine.

She spent very little time asking about symptoms. She did send me for a c-spine. She never saw the film for the c-spine, decided to take the radiologist report as fact this time I guess. But went against his report for the brain MRI. Seems a bit inconsistant to me. Doesn't it?

I had a BAER, VER, and SSER done yesterday. The tech said things looked ok but the doctor had to look at them.

So, here I am wondering what to do next. My ON is getting somewhat better. I am at my 10th week with it. I am praying more of my vision returns. Things are still blurry. They tell me it was mild. If this was mild I would hate to have a bad case of it! I have been miserable!! I can't drive very far because it is difficult and I get tired.

So, I am wondering if I should collect all of my tests and go to a MS clinic. How do I know for sure the spots on my MRI are related to a virus or bp and not MS?  They were not in the exact spot or the right shape for MS, but the radiologist did call them demylenation. Who do I believe? The radiologist or the nuerologist?

I am also having trouble with what MIGHT be foot drop. When my right leg is fatigued I can not go back on my heel on my right foot. I can hardly get my toes up off of the ground. My left foot is fine. I can even do calf exercises with my left foot. I can not longer do them with my right foot. I can not support very much weight on that foot.


HOpe this is not too long! I just do not want to be brushed off by this doctor. I have a family. I have 5 small children. I want to have at least an idea of what is going on with me. I am very worried.

LATW
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We need you to add your stories.  this is an ongoing thread.  Thanks, Quix
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hi all, have only been diagonised with ms, due to spotting of brain lessions on mri, does this always mean ms , i am confused if the neuro only told me this because i kept askig him did i have it, cause it runs in my family, anybody any advise. the only sign of his i had was foot drop, which i have worn down discs in my back so that was all i was putting this down to, untill i had a brainn scan, im only 22 & unsure of how positive neuros will be before they diagnose you, can anybody help
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HI Harrie,

Welcome to the forum.

You might want to post your question as a new question so people see it.  There are some pretty clued up and supportive people on here who'll probably me able to offer some advice.

Em
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hi

thanks for the advise how do i go about posting what iv asked as  new qs, as im only new to this.

harrie
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Hi Harrie,

I know it took me ages to work that one out...!

If you go back a page to the messages bit there is a 'post a question' bit (it's in blue...I think) right above the messages.  Just click on there and it should open up a new page where you create your post.  

Any probs just post me back on here.

Where you at by the way...USA?
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Just bumping it up for stories from Carol,Karina, Angela, MedicGirl, T.O.Fire, JonM,Harrie, Burbanchick,Doreen, Janey, Sllowe, and Wreck!  And anyone else with a diagnosis I missed (with all apologies!  Quix
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I sent a note with the abridged vversion (wreck's colision with MS) but for the sake of continuity, I'll certainly join in here.  Please excuse any typos--I've decided that is the most tangible sign of my MS.  I NEVER used to have typos!

Let's see.  June of 2005, I had a heart attack.  A couple of months later, at my neurologist's (I have RLS) I told her I thought I must have had a stroke along with my MI, because I was having trouble rembering people's names.  That was something I was always good at, and suddently, I'd see someone that I had worked with for years, and couldn't come up with a name.  She said, that happens sometimes after an MI, and we dismissed it.

Oh yeah, the year before, I spent about 6 months being treated for "tennis elbow".  In retrospect, I wonder...

Anyway, December of 2005, I started having neck pain.  It was bad enough that my husband got me a cervical collar that I wore at work (It was much more comfortable aat the computer).  It kept on,so I finally went to see a chiropracter.  She treated me for a few weeks, and the pain wasn't getting any better, so she suggested an MRI of my neck, to see if there was a disc problem.  

The MRI showed some lesions, and the radiologist suggested an MRI of the brain.  They found several lesions on my brain, as well.  My neurologist said she didn't want to label me an MS patient without me having any symptoms, but she ordered a spinal tap, jsut to be sure, and did a battery of tests.  The spinal tap caame back positive for MS.  But, some of the other tests were positive as well, so she sent me to a rheumatologist.  All she identified was some arthritis, but did a battery of more exotic tests.  She said,she'd like to repeat the tests in 6 months,  in case I was just developing lupus or something (joy).

My neurologist get me in to see an MS specialist, who did a few more tewsts, although he said he was 99% certain I had MS.  One of my other antibodies was really elevated, and he said he thought I might have autoimmune encephalopathy, which is very rare, but responds well to steroids.  So he put me on high dose oral steroids for awhile.

That didn't seem to help, so he decided it was MS after all, and said I needed to start treatment.

At that point, he thought I had primary progressive.  But my next MRI showed some lesions had disappeared, and some new ones developed, and my first neurologist said she thought that would indeicate relapsing-remitting. The second neurologist agreed with her assessment.So, here I am, diagnosed with MS "without symptoms".  Although, after investigating what the symproms are, I certainly have them.  Just not the dramatic ones.

2006 was a fun year.  I counted in september, and I had had 18 doctors' appointments so far that year.  One of which was to a neuropsychologist--which was another adventure!

To any of you who are still with me; thanks for reading my story.  I'll post a question in another thread...
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bumping it up, Q
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For anyone with an MS diagnosis, there's a bunch now that need to be added to this thread.  If you already wrote one up and posted it, please copy and paste to here.  Thanks.

SLlowe
Carol (Hey, Hotlegs, where's your story?  Find it and get it here with the rest of us!....please)
Siddy
Burban-chick
Karina (karzme)
Angela
Kitten O
MedicGirl
JazzyFizzle
Savagek (Rob, if he will still have us)
Risnerrose (Sherry)
Karina2805

And Antone else who I missed,  sorry, I was playing poker.... Quix
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My timeline diagnosis brought forward

I have led a very active life, worked out, walked, never overweight , low blood pressure, no medical problems, etc.  and as far back as I can remember I have been relatively healthy. Until………

Fast forward to 1998  at 58 years of age when 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.  If I looked up to the ceiling  and back quickly I experienced  a sensation of falling for maybe 20 seconds when the room spun around. 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. I had a particularly painful bout when I traveled to New Zealand for the death of my mum (stress). The vertigo was mild and it improved and was nothing I couldn't handle by avoiding those movements. I still get it occasionally.

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. My Neurologist  thought it might have been a touch of Bursitis.  X-rays showed several lucencies in my bone  and it was concluded that it was consistent with disuse of the arm or Multiple Myeloma (bone cancer). Cancer was ruled out after tests so it was put  down to "disuse".    Eventually that pain went away and I was left with a  somewhat weaker arm/hand.   I did some physical therapy to help strengthen the arm but it did not last too long before getting weak again.

In between all this I had a few emergencies and procedures, but  they are not, I emphasize NOT, relevant to MS but probably speak to stress factors that did not help me. While these were going  on I had little time to worry about the smaller things going on in my body.

2/2003 I had a DVT  in my left leg and taken off HRT abruptly.

5/2004   Total Right Hip replacement surgery (back and hip  pain disappeared) but my left side arm and leg became weaker after surgery.

2/2005 dieulafoy lesion which required a blood transfusion. It is  a bleeding artery in the stomach and happens spontaneously, without warning.  There is no known cause.

12/2006  fall in the shower requiring 26 stitches to buttocks - most likely due to dizziness

4/2007Just recently had another fall requiring foot surgery  - my footdrop caused me to trip over the carpet.


Anyway, going back to July 2005 I decided that because my left arm was getting 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.  This primary care doctor has a sister-in-law with MS but never even dreamed, thought or mentioned the possibility to my husband and I.  He thought I had another TIA.  He referred me to a new Neurologist as mine had left Florida for N.C.  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  almost immediately diagnosed 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 yhe 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. I tend to disagree, but what do I know?  I forgot all about it in the years that followed never thinking for one moment that it might be in any way significant after 30+ years.

My new Neurologist wanted a second opinion from an expert 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.  
MRI  - brain -   Two current white spots on the brain
EMG's inconclusive but not 100% normal
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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. 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 Secondary Progressive MS.   The Neurologists always prefer to have at least one prior incident to dx MS so the early one 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 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 fall to help with the footdrop. The weakness varies in my left hand from weak to useless. I get severe night sweat. My left leg swells up in the evenings if it is not propped up and it  sometimes feels numb and I have to poke it to see if anyone is home.  

contd.........
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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 tried to get copies from his office of the results from the 2 labs for my LP and Bloodwork  from Quest  which he ordered and met with a stone wall. His policy was because of HIPPA laws I would have to go to the hospital where he performed the LP and to Quest Diagnostic for blood tests results (even though he has them in his files).  Quest would not release them to me without his written permission so it is a Catch-22 situation and I have yet to get to the hospital to try for the LP results. Bit late now, seeing it was almost 2 years ago.  I haven't seen a doctor for MS in the nearly 2 years that I was dxed.

Other symptoms which I can deal with: are my feet and hands burn sometimes - usually late at night while in bed. By the end of the day my footdrop becomes a lot more evident and I can hardly lift my foot. Every night at 3 a.m. exactly my left hip itches  and the more I scratch the more it itches.  No rash, though.  Most days I get overwhelming tiredness to the extent that my body literally droops over if  I have overdone it..When I rest I can go again, for a while.

contd............

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.  I can say for a fact that I will end up in a wheelchair unless there is a miracle. Doctor thinks so too.

Marcie
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If there is anyone else that has posted their timeline story in a different place - can you add it to this thread so that everybody can read  all  the timelines of people that have been diagnosed with MS  in one place?

These are Quix's words:

"........For anyone with an MS diagnosis, there's a bunch now that need to be added to this thread.  If you already wrote one up and posted it, please copy and paste to here.  Thanks"..................

SLlowe
Carol (Hey, Hotlegs, where's your story?  Find it and get it here with the rest of us!....please)
Siddy                    -   DONE
Burban-chick
Karina (karzme)
Angela
Kitten O
MedicGirl
JazzyFizzle
Savagek (Rob, if he will still have us)
Risnerrose (Sherry)
Karina2805

And Antone else who I missed,  sorry, I was playing poker.... Quix
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I was diagnosed with MS 12 years ago.  It is not unheard of to actually have MS and have NO lesions appear on MRI.  BUT...in time, if you indeed do have MS, the lesions will make themselves known.  I know there are some people diagnosed with MS, that have never had lesions.

Of course, all of us hope that you do NOT have MS.  MS can be a very difficult disease to dx, since it can mimic so many other diseases or even a combinatiion of diseases...Diabetes, Fibromyalgia, Chronic Fatigue Syndrome, Vitamin B-12 deficiencies, Peripheral Neuropathy and the list goes on.

I know what it's like to feel helpless while waiting for a diagnosis of "SOMETHING."  You begin to doubt yourself, your family doubts you, you wonder if you are crazy, you worry that your doctor thinks you are a hypochondriac...I've been there.  Despite 7 highlighted lesions in my brain and one in my spinal cord, I had a Neuro that would not diagnose MS because my evoked potentials came back normal.  I was stuck in la-la land for many years.  All I wanted was help.  If I indeed had MS, I wanted to begin treatment to slow it's progression.  It wasn't that I WANTED to have MS.  I consequently told the Neuro good-bye (nicely, even though you can imagine what I really wanted to tell him) and went to a teaching hospital in Virginia.

I finally submitted to a spinal tap, which showed the typical banding seen in patients with inflammation of the Central Nervous System.  Put all the information and symptoms together after many years of complaints and badda bing...I was finally diagnosed with MS and put on Avonex.  Happy?  Yes, in the sense that I finally had a diagnosis, which was a disease that could be treated; if only with expectations that I would be in that percentage of 30-40-% that the Interferon Beta 1-A 'might' help.  It was worth the gamble. But happy to have MS...HECK NO!

It's so hard to be between the symptoms and the diagnosis.  Sometimes it can be a long wait.  Now I look at things differently than I did before...if I really didn't have MS, would it have been wise to treat me for a disease I only "thought" I had, even though I had detectable lesions, relapses and remissions and certainly all the symptoms?  I was literally a "text book case" of someone with MS, as the diagnosing Neurologist finally said.  

I truly believe in today's medical world, most Neurologists err on the side of caution.  If it looks like a duck and acts like a duck, treat it as a duck.  I think  that most doctor's feel that it is better to start you on treatment for MS and it's flair-ups, than to not treat you at all.  As is usually the case, the lesions from MS will eventually show up.... All the symptoms will finally fit.  It's the waiting that can be the hardest thing about dealing with MS.  It took 3 long years for me to finally receive my diagnosis.  Believe me when I say....family members and friends were standing in line, waiting to offer their apology's for doubting me.

Just for information purposes- (the symptoms during pregnancy)...MS symptoms seem to abate and return about 6 months after delivery.  It seems that hormones present during pregnancy and the female body's immune system changes; (that allows the foreign "being" to develop without the mother's body attacking the baby as a foreign invader or infection) prevents or stops MS symptoms in it's tracks.  If only for a little while.  This is 'one' area the researchers are very interested in.  This offers us hope.  We not only need a CURE but a way to REVERSE the damage already done by Multiple Sclerosis.

If you really feel that something is wrong, despite what some doctors may tell you; keep fighting...there ARE doctor's that will listen.  NEVER give up, NEVER!
There is probably no better place to go for help than a center that actually specializes in treating Multiple Sclerosis.  If it means you have to travel across the United States to find such a center, than it's worth every penny spent.  It's your health and well-being, we are talking about here.  You can't put a price tag on something that important.

Heather  (And that's not Heather with MS, it's Heather that lives with a disease called MS.)  MS does not define who I am.  I'm too stubborn to let it.
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Symptom Timeline

1997 Spring
- Parvo B19 during first month of third pregnancy

1997 Summer
- eye exam, blurred "spot" in lower peripheral vision, notice it when reading in bright light, esp. if paper is shiny, white (remains to present)

1997 throughout pregnancy
- hands fall asleep, acid reflux, drop in blood pressure, tachycardia, fatigue  

1998 January 16
- birth of third child

1998 October
- gallbladder removed (severe dizziness for two weeks following, eyes felt like they were jerking from side to side)

1999 Spring
- sudden blurring of vision (severe for about 15 minutes, blurred for hours)

2001 Spring
- woke with "crick" in neck, extreme shoulder pain followed  

2004 Winter
- hypertension (began medication)

2004 Spring
- hypothyroidism (began medication)

2004 Fall
- shoulder surgery for hooked acromion, immediate relief of pain

2005 Spring
- shoulder pain returns, but not as severe as before

2006 January
- foot pain, toes seem numb, finger pain
- referred to rheumatologists (all tests were negative, except Parvo B19 and B12 was in the low normal range)
- began taking B12 suppliments

2006 Spring
- knot behind left knee, limping (lasted for four weeks)
- blurred vision (have had periods of blurred vision off and on for quite some time)
- tingling sensation in feet and face (face and scalp continue to tingle)
- sensation of wearing a tight knee-high sock on right leg (continuous for two months, reoccurs on occasion)
- had an episode of sudden "weakness" of right leg and right arm, managed to get to sofa, hand was flopping like a rag doll (lasted 5 minutes, muscles fatigued for the day)
- GP suspects MS:  ordered MRI (with and without contrast) and referred to neurologists

2006 Summer
- severe squeezing around rib cage (lasted 15 minutes, sore afterwards)

2006 August
- neurologist appointment:  most symptoms were gone at this point, except tingling in face and scalp; fatigue is awful
- reflexes were fine
- MRI was clear (found out a year later this was an error)
- diagnosed with idiopathic peripheral neuropathy

2006 Fall
-increased synthroid (I thought this was the problem, felt better for a while)

2007 January
- symptoms return
- thyroid levels fine
- GFR slightly low
- blood pressure inconsistant
- vision blurs and clears
2007 May
- had a second episode of sudden "weakness" of righ leg and right arm (lasted for several minutes, muscle fatigue afterwards)
- 2 or 3 mild episodes followed over the next few days

2007 June
- at church camp (I was stressed, fatigued, and over-heated), I had another episode while walking; I was unable to move my leg or hold anything
- called doctor's office, receptionist set up appointment with neurologist
- had multiple episodes through the week, one woke me (right leg was rapidly trembling and fingers on right hand were tightly curled in)
- stopped driving
- GP ordered MRI
- instructed me to take an aspirin daily
- MRI (without contrast because of kidneys)
- began to notice cognitive issues:  word recall, planning, could not focus, etc.

2007 August
- neurologist said MRI showed several foci indicative of small strokes until he pulled up MRI from 2006
- both MRI's showed several small lesions (unchanged according to neurologist)
- I was unsure how new damage would show up without contrast
- ordered a lumbar punture

2007 Late August
- had LP
- neurologist thinks not MS, possibly migraines, seizures, psychosis

2007 (3 days after LP)
- had an episode similar to above that lasted 10+ hours; chill bumps, nausea, weakness, etc.
- arm continues to "spaz" and is accompanied with nausea

2007 September
- IgG elevated, need to start meds
- seeking an appointment with UAB Multiple Sclerosis Center

  


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228463_tn?1216765121
If there is anyone else that has posted their timeline story in a different place - can you add it to this thread so that everybody can read  all  the timelines of people that have been diagnosed with MS  in one place?

These are Quix's words:

"........For anyone with an MS diagnosis, there's a bunch now that need to be added to this thread.  If you already wrote one up and posted it, please copy and paste to here.  Thanks"..................

SLlowe
Carol (Hey, Hotlegs, where's your story?  Find it and get it here with the rest of us!....please)
Siddy                    -   DONE
Burban-chick
Karina (karzme)
Angela
Kitten O
MedicGirl
JazzyFizzle
Savagek (Rob, if he will still have us)
Risnerrose (Sherry)
Karina2805
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Im a 36 yr old mom of three.  A 18 yr old senior in HS, an 11 yr old w/ Autism, and a 5 yr old.  I live a very intensely stressful day to day life.
I am pissed off, frustrated, concerned, and am at a dead end in the way of trying to get a definite diagnosis.
Summer 1999~ son got dx'd w/ Autism and I fell apart emontionally and physically.  Started to have headaches and tingling in ends of fingers, went to Neuro, MRI showed no lesions, told me I had a nervous breakdown over my son
Summer 2001~went a different Neuro due to headaches and legs feeling heavy, ordered MRI, no lesions again. SHe gave me Neurontin for the headaches and sent me on my way
July 2007~Headaches (again) Tingling in right foot, charley horse in right leg, muscle spasm on lower back and top of left arm feels desentitized (but not numb)
Go to headache clinic and they say I have  Acute Migraine syndrome. Ordered a MRI in early Sept (brain, no spine this time), came back normal.
Sept 2007~Then the weird feeling in my left arm goes all they way up it and wraps around my back and down my other arm, my hands start to tingle and then I got extreme pain (neuropathy type burning) in my hands for three days, the only thing that would relieve the pain was soaking them in HOT water, hands and arms also feel very weak during this 3 day span. I also have muscle twiches during all of this.
Mid Sept 07~ go to Rhummy doc to see if it could be something autoimmune related, stillhavent gotten test results (took 8 tubes of blood)  He tells me that I have Fibromyalgia
Went another Neuro a week later and he tells me that I dont have MS and that I need to see a psychiatrist, he also said Fibromyalgia.
How can it be Fibro w/ all of these neurological symptoms.  I do have muscle pain but the neuro symptoms clearly out way them
Currently all of the symptoms have disappered exceptright foot still doesnt seem like its attached (no tingling or numbess) but fatigue and arm/leg muscle strength is still not where it was before. Ive been completely freaked out, on the internet constantly since all the symptoms started (3 mos ago), lost 25 lbs due to worrying myself to death over the uncertainty of my health.  Like I said Im am at a dead end, with no diagnosis and no where to turn.  My symptoms clear spell MS but I fear that by the time I get a definte diagnosis I will have permant disability, which could have been avoided w/ early intention of immunosuppreive drugs.  PLease help, desperate for suggestions.
MissouriGirl



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bump
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bumping again...
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i have been going through so much since i had brain surgery in july 09 i had surgery for Arnold Chairi I malformation. them became paralyzed on my right side. numbness and tingling and itching all over i am in pain all of the time. they have tested me for ms and everything was clean. now going for more mri's on the 20th of decmber and then another spnal tap this will be number 6!! im soo tired and depressed i really need to talk to people who are going through the same thing.please help!!!! my name is Tina B i am 38 and i feel like im going crazy and i feel that the doctors think im making it all up.......



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I am a 51 year old female.  My journey began very strangely.   I have been a teacher for many years, but began substituting in the 2006/2007 school year.  In November of 2009 I was assaulted by a student when I confiscated his cell phone.  He came after it, throwing me headfirst into a wall.  I sustained a closed-head injury and a torn rotator cuff in my left shoulder.  The head injury caused a severe and continuing headache.

Because my headache had not gone away and I had also begun having significant balance trouble, I was scheduled for a brain MRI.  When the radiologist examined the films he stopped counting lesions at about 30.  His report described it as 30+ lesions.  With that, I was immediately sent to a neurologist for further testing.

It took a while for my insurance company to authorize the other tests, but they were finally done.  The brain MRI with contrast actually showed many more lesions than the first one.  The spine films were clear.  

I had the lumbar puncture on November 9th, and I am still waiting for the results of it.  The experience was a nightmare.  The numbing injection did not take, and when the needle went into the spine it was excrutiating.  The doctor had to inject more numbing and go in again to retrieve the fluid.  By the next day I developed a terrible headache.  I went to my primary care doctor who said I had a spinal leak, and she sent me straight to the emergency room for a blood patch.  I ended up spending 2 days in the hospital.  On the second day a blood patch procedure was performed, and the headache slowly went away.

Since the onset of the original headache and balance problems I have continued to deteriorate.  I have footdrop in both legs that now requires me to wear AFO's (braces) on both.  The weakness has gotten worse and worse.  I have used a cane for some time, but now use forearm crutches when my balance is particularly bad, and when I know my activity is going to require a lot of walking I use a wheelchair.

The changes have been devastating to me.  I was very physically active right up to the assault.  Little by little I have had to lay aside all the things I loved so much to do.  I was a long distance cyclist, having finished a 60 mile ride just a few weeks before.  I was also forced to give up refereeing high school volleyball and basketball, too.

The greatest blessing I have received through it all has been the wonderful support by my many friends.  They have rallied around me and supported me in so many ways.  I am truly grateful for them.

Beth
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the bad vertigo i fear every nite when going to bed it'll return.

rode a bike the other day and just the slight little bumpiness over a wooden bridge set off symptoms again. one neuro says it's the lesion at C4 and one says no, its the disk disease there causing neurologic issues when aggravated, such as jumping, jarring, shouting, walking hard, etc.

balance and weakness/fatigue flare up when this happens as does the irritable personality thing -- just not a happy camper during it. BUT, the vertigo/dizziness that i have fought on/off over the years scares me much as it is so freaking debilitating.

so me friend, i can empathize. i know an old post but felt like writing
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Thank you for your observation and discussion of your findings.  I've had weakness and fatigue in my right arm and especially in both legs for about 10 years now.  It comes and goes about twice/year.  The first time was when I was driving a standard shift and both legs stopped working.  I thanked God that I had my son in the car to help.  I had him to use his left foot to stopped the car.  The weakness in both legs usually lasts about a week then the tingling starts, then my legs get stronger.
This year, I decided to take a plunge and go with my church on a 3 mile walk.  I didn't do it last year, because I didn't think that I could finish it.  I felt good this time and had no problems all year.  After the walk that day, I had no problems, not even stiffness.  I felt good!  The next day, some stiffness, weakness, but little pain.  The second day, no pain. profound fatigue and weakness in both legs.  
I had an appt to see the Rhematologist that I had been seeing. for pre-lupus symptoms that day.  He was astounded by the sudden change.  My legs were so not responding that I had to use a wheel chair to get around .  He decided to send me to a neurologist to rule out MS.   I've had MRI's of brain, spine with normal results, except the brain showed a small non-enhancing left preventricular white matter and left mid pontine FLAIR and T2 hyperintense foci.  The Rheumatologist did not address this,  as though, it was non-significant.  He referred me back to  the neurologist because he couldn't see anything that he could address.  The MRi's were not significant to the neurologist also, no signs of MS seen.   Although she ordered physical therapy, an MRI of neck and back for two more weeks.   What could be going on?  I would appreciate it if you could comment.
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This is a note I wrote for some very close friends to describe the story of how I got from a pain in my arm to MS

What's Been Happening With Bob's Health on Friday, November 12, 2010 at 5:12pm

http://www.medhelp.org/user_journals/show/249516/Whats-Been-Happening-With-Bobs-Health-on-Friday--November-12--2010-at-512pm
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4414032_tn?1354213517
I found this discussion as I was researching MS yet again.  I am a 55 year old woman diagnosed with optic neuritis in my right eye about 8 years ago.  Now I am losing the vision in my left eye.  The new opthamologist suspects it is not optic neuritis and that I was misdiagnosed originally.

I am awaiting the results of an MRI done last night without contrast due to my kidney disease.  I am set to start agressive IV steroid treatments today despite the lack of a solid diagnosis of what is going on.  She suspects optic neuropathy.  She clearly told me she does not believe I have MS as I am too old and that the optic problem was not painful.

I have many of the other symptoms and have lived with them for years.

Numbness
Electric/nerve pain
Incontinence
Bowel problems
Fatigue
Heavy legs
My hands go completely weak for no reason

Most of these symptoms were attributed to my previous diagnosis of Fibromyalgia.

So we will wait and see what the newest MRI results show and I truly hope that I don't lose any further vision.  Any recommendations from the group?

Gail


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1831849_tn?1383231992
Hi Gail - Just a heads up that the thread to which you posted is 2 years old. Many of the posters may no longer be around Quix has not been here in some time, which is a shame given that she was the resident MD.

As to you current situation, the diagnosing of MS can be a very long, very frustrating journey. If I were you I would take all of my findings to the nearest neurologist specializing in MS. They should be able to help you rule MS in or out.

Keep us posted
Kyle
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