MS VERY CONFUSED AND A LITTLE UPSET

[lagwithms]

For about eight yrs now I have had symptoms of leg pain and have been DX with fibromayalgia.  Had been hospitalized five times over three yrs because of leg pain and my legs just giving out on me...not responding.  Well three yrs ago they thought it was lupus and ruled it out and I was given a dx of MS.  I had had MRI done at hospital and it showed lessions on the brain, labs would show muscle difficiencies etc.  My attacks would always come during summer I would be down a few wks (about 8 days in hospital and rest recovery at home).  I have NEVER been on MS medicatation.  I truly believed I was misdiagnosed.  Brings us back to year.  Had been hospitalized ywice for cellulitis of the face and foot but after my June hospitalization and my flair up I did not go back to normal.  A few months ago I saw my symptoms worse my vision in my keft eye had become blurred, painful, foggy.  I thought it was from the facial cellulitis.  My keystrokes were off completley.  I continuously dropped things with my right hand and my left I occasionally threw back.  My right foot started to drop and I had tremendious knots on my thigh that looked like a mass.  Literally I could not move my legs this went on for about six weeks.  I went into the hospital Im allergic to prednisone so they gave me 5 days of ATCH theray IV ( stimulates my own steriod to the pituatary gland) my labs started going back to normal, Oh did I mention new nuero because I never really followed up with the oter dr or original dx.  Well now that my symptoms are so evident she says you dont have MS.  My MRI did not show significant remarks.  She will treat my symptoms and not MS.  ok...I have never felt worse, my gait is totally off, my balance, my memory, brain fog constantly.  My legs do not respond I am literally walking with a walker.  Dont know what to do.  Everyday is worse.  Suggestions please.  On trileptal 150mg 2xs daily, ambien cr 12 mg, zanaflex 4mg 2xs daily, fentynl patches mcg and percocet 2 tabs every six hours.  I am not taking the percocet and sometimes I got with out putting on patches because it is not so much the pain but the balance, gait, function of legs, etc.  Oh btw my eye this nuerologist and her Director of the department when I first saw them in the office said I had optic nuerotis but when I was hospitalized one of the opthamologist said I had it and the other didnt.  Couldnt it had healed?
Can one be diagnosed or undiagmosed for not significant lessions?

[supermum_ms]

Hi Lag and welcome,

I dont recognise your name so if your not a newbe please accept my welcome as me being a dill again! lol but if you are new, please have a read of our health pages, top right of your screen, yellow icon, many of your questions will be found there.

I'm sorry you've been thrown into limboland, it always boggles my mind how someone with a dx of MS can loose it when they see a different neuro or stay in limbo for years before changing neuro's and then getting their dx. Its just wrong! wrong! wrong! and your unfortunately not the only one its happend too, why it happens are reasons few of us really understand. small comfort there.

You sound sort of classic RRMS to me (i'm not a dr mind you lol) and id say that you've reached a stage where your sx are no longer fully disapearing, i'm asuming that was one of the reasons why you didn't believe you had MS, it went away. Now maybe its screeming MS to you and the neuro is saying not what it is but what it isn't, i'm not following the logic behind that though.

I'd go back to the original neuro who dx you or at the very least see another neuro, maybe stressing that you are not looking to be dx but for them to take over treating your MS. I would also be asking this current neuro to explain why with out an alternative dx they have taken away your dx of MS? but i'm a curious sole lol!

Lesion are not always MS, some neuro's are lesion counters and a certain number in only classic MS locations will allow them to dx MS, read the health pages i mentioned prior and you'll find this covered in 'how MRI's show lesions in MS'. You may also find the one about the 'mcdonald criteria' and the one about 'how can a person with MS have a clear MRI'. I'm not sure but ON is a common topic here and if there isn't a dedicated health page on the subject, you'll find something if you search the community pages.

Sorry if i've not been helpful, my brain is on the go slow and i'm chasing my tail trying to make sens of my own thoughts lol. so sorry about that!

Cheers..........JJ

PS many of our members have difficulty with sight issues and if you break your posts into smaller blocks, its much easier to read and you'll get more responses too. :-)  

[lagwithms]

Sorry also add involuntary muscle spasms, pins needles and falling asleep (legs).