My Road to 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 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.

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 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.  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.  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 brain or spine lesions 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, 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.  His concern was than in just 2 years, I was already very disabled.  I 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 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.

Well, I'm tired now (it's 1am)  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....

Any comments?  Later I'll try to list some of the things I've learned from all this.  Quix

[NaniKai]

I don't know you but from reading your posts and subsequent advice to others while your ill yourself is valiant in my opinion. I hope that you know how much people here appreciate you ...I've seen it in postings, so please hang in there and just respond or add when you're up to it.

You're so brave!

NaniKai

[Idab]

Amazing - reading your story has brought much hope to many soon-to-be diagnosed MS suffers.  Nothing like hearing it straight from the horse's mouth.  When you are feeling strong and up to it, please could you also respond to the posts on the MS site, they could certainly benefit from your knowledge and experience.  Although you don't get to answer all the posts (and I can now understand why) - reading your answers have brought some hope to me personally (I have printed a copy to keep, in case it takes this many years for someone to come up with a diagnosis).  Keep us posted - you have a lot of readers riding on your story.  Take care and keep up the courage.  

[chick1]

Very interesting!
I can't believe the nerve of your 1st Neuro.
He sounds like a total jerk!
I am very fortunate to have a very nice, compassionate Dr. who seems to genuinely care about his patients...........although I must admit at first I thought I was getting the run-around....
only because I wasn't diagnosed on my initial visit..ha ha, boy have I learned alot! (I actually was keeping my guard up, thinking when I tell all my symptoms,"this guy is gonna think I'm a nut!"
I actually asked him if he thought I was goin g crazy, and he said "NO, I believe you, it's just that it may be too early for it to show up in tests".
I gotta tell you when he said that, a load was lifted off me!
I now realize he is doing his best to try and figure things out, especially given the bizarre list of non-specific symptoms I have.
Neurology can be very tricky, lots of diseases that mimic and masquerade as one another. It's basically a process of elimination.
I'm so glad to hear your story, it helps me realize that the rest of us will hopefully hear something soon.
One question concerning MS drugs......Did the Dr. immediately put you on Avonex, or did he tell you about each drug, and let you make the decision as to which one you wanted to take?
I hope that doesn't sound like a stupid question, but I've read that there are
several drugs that basically do the same thing, only they have different freqencies, as far as weekly number of injections.

Take Care!
Mel

[Northcoast]

Just wanted to post to wish you well.  I had my first MRI ever yesterday and am awaiting the results.  But the technician said "I shouldn't tell your this but it doesn't look like MS to me".  It felt good to hear, but am still waiting to hear an official answer from my doctor.  This board is wonderful to read about others who are struggling and fighting their ailments.  Good luck to you!

[Quixotic1]

Thank you all for your posts.  

Mel - My doctor was up-front about the meds.  He spent an hour going over the research with me.  He also revealed that a good deal of the funding for his research comes from Biogen Idec (makers of Avonex).  This was no surprise.  Most researchers have some connection to a pharmaceutical company.

The interesting thing about the discussion we had was not only about frequency of injection, the dose of injection and the side effect profile of the 3 interferon drugs and of Copaxaone, but he also explained in detail the subtleties of the effects of neutralizing antibodies.  The drugs can be seen as a sort of ladder or stair-step of increasing dose, increasing incidence of side effects and increasing incidence of the formation of neutralizing antibodies which render the drug ineffective.  If you start high on the ladder, say Copaxone, if the drug becomes ineffective due to antibodies, the other drugs are also often ineffective, thus your options are more limited.  I followed it all the time, but can't remember all the details.  I verified what he said on my own and he gave me a month to research for myself.  In doing so, his reasoning seemed sound for starting with Avonex,  so when I saw him next I agreed to it.

What I saw in this neurologist was a man of compassion, integrity and incredible brilliance.  I knew that he understood more than I could hope to and I decided to listen to him.  I can usually tell when someone is BS'ing me.  So far (12 days into the injections) - weekly in my case - it seems that I will be getting off fairly easy in the side effect department.  I have had diffuse myalgias and an increase in my spasticity lasting about a day.  It is nothing like having the flu.  A couple mild chills, but in all nothing I can't handle.  The stats are good that these will abate after a few months, but even if they don't, it's tolerable.

I've read posts from people describing what their physician has told them and I don't think they truly were given balanced info.  In the end, I'm not sure it's important.  Avonex has the longest history and I'm comfortable.

Quix

[chick1]

Thanks for the info, my neighbor has had MS for 13 yrs, and is on Betaseron. She complains alot about flu-like symptoms, it's encouraging to hear about other drugs, that don't make you feel "like ****" all the time........I just assumed all the drugs were basically the same. I read about the latest drug out, starts with a "T" ...can't remember the name, but it's an I.V. that is administered once a month......I think is still in clinical trials??? it sounds intriguing as for as dosage, but it has so many side-effects or possible contra-indications, that I don't really think it would be a drug I would choose.
Even though I haven't been diagnosed as having MS yet, I thought it would be a good idea to read-up on the subject and prepare for it........just in case.
Again..I can't thank you enough for being kind enough to share and give advice!
Take Care, Mel

[kitlyn]

Hi : i'm sorry your going through this long road to diagnosis. I was stricken last yr w sever weaknes son rt side , arm, and mainly sever ehead pressure,  i have posted here before , they thought it was anxiety  then neuro found the dreaded spots, two on each side of brain w mass affect. He said that a neoplasm couldn;t be ruled out/ I also had severe  head pain and sharp piercing pain , like daggers and stroke like symptosm in my jaw, it was terrible. Then suddenly last Jan they got better the symptoms, i got this lkast July of 06 , 5 months after July 06 anothe rMRI of brainw a sdone, and showed spots both less prominent , he said that the a brain tumor is ruled out now.  I still get a weird feeling in my throat area like i cannot swallow or  its feelings like my throat is paralyzed. This comes and goes.  I ams cared when i get these odd things.. I wa swondering of anyone has the throat thing. I know what anxiety is and its not that, its a strange.. Going to MS specialist in Aug .. Very costly and long wait, they dont want to do the lumbar unless necessary /. My heart rate has also increased since all this head pressure started .. I understand how you feell, all.. This came on so suddenly i dont drink anymore as i loved it, but feel it may complicat ethinsg, very hard to do that. Peace K

[drjk]

Hello This is too  Quixotic.
I know just how you feel when it comes to the doctor saying well you dont have any lesions so no MS. I have had my neruo tell me o it is just hot flashes. here are my symptoms started all march of 2006 first started when i would be out in the heat tingling in my hands, dizziness. then this started one night burning in my feet and buzzing vibrations then i went to my room to go to bed and the room started spinning like i had been drunk. i was scared. so i had only problems with tingling that would come and go i cant take  the heat makes me worse. then back in late in 2006 i started having dizziness bad again so my regular doc has already ran a bunch of test ruling everything out. back in jan of 2007 i started having short term memory loss and severe dizziness,burning in my feet and tingling in my hands. so i had a new neruo only for him to diagnose me with cognitive dysfunction and pararthesis. i go back to him for a check up not realizing i has saw his partener he comes in my room and says i see you saw my partnener he said to me no lesions no ms so here i am left hanging and i dont know what to do.. i have had problems with shock problems in my neck. problems with the muscles in my legs making it hard to walk. and only a couple of times problems with my foot dragging. my regular doctor told me that sometimes patients with ms never have any lesions he has told the neruos to do spinal tap he said it is ms we just need to prove it.. some doctors can make you feel stupid when you are trying to tell them what is going on i mean it is our bodies i have read enough to know that my doctor is right it is ms its said when we are the ones suffering here. please feel free to contact me at ***@****

[drjk]

hi again this too is to quix or who ever wants to say something i have also had my legs or my body jerking at night.. i forgot to mention that.. sorry thanks everyone great website