Sunday, October 26, 2014

Sunday, March 28, 2010 Gabi, Community Member, asks

Q: If it's not Multiple sclerosis, then what is it

If it's not Multiple sclerosis, then what is it?

I have hd so many tests to rule out the mimics yet the spinal fluid shows no Obands(that was done a year ago) and there is only 1 Lesion in my brain that "may" be consistant with MS> I go in for a 2ond LP this week because last time I was on solymedrol and the doc thinks it may have masked something because no O-bands showed up yet clinically I HAVE MS...what gives?

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Answers (2)
Vicki, Health Guide
3/29/10 7:02pm

Hi Gabi,

It is difficult trying to figure out all of the stuff with MS. If you have already taken all of the tests to eliminate other conditions that mimc MS, it does seem logical that your answer is MS. Only the doctor knows for sure.

However, perhaps your doctor is trying to determine the type of MS you may have.

Talk to your doctor about this. Before you go in for your test results, think about any time in the past you my have had a recovery period. That history will help define your particular MS.

Please let us know how the test comes out.

Gabi, Community Member
5/12/10 2:26pm

Hi Vicki,

Thank you for your answer, this is just sort of an update on whats been going on. I have now been to my regular neuro,had a 2ond LP done and also saw a second neuro who looked at the "paperwork" and declaired he was 98% sure I DID NOT have MS. Through a wonderful group of MS folks, I found a center that accepts my insurance and I went to see him, sadly though he did not have all the pertinient information he required. although he said "based on clincal finding he would have to concur with my main neurologist. He does want some other tests results and of course EVERY MRI that I can get hold of since "most of this started" so I have to scavenge to locate them all. It is highly possible that they are still "looking at MS" as the culprit but depending on what he sees in the films may point him into a different although related condition. So only time will tell I suppose.

Vicki, Health Guide
6/10/10 1:04pm

Hi again Gabi,

It sounds as if you are going through quite a bit.  By npow you know there are many other conditions that mimic MS, and they all have to be eliminated.

Be sure to keep all of your records, but you are discovering that. You are doing great. You are right when you say only time will tell.

Please let us know when you have an answer. Good luck.

Gabi, Community Member
6/27/10 4:05pm

Well here I am again this time with a little more information. through some folks at my MS meeting I found a clinic that specializes in neurological diseases, I had an appointement with him and he went over ALL my MRI's from Jan 09 till current, as of then. he then came into the office and refered back to my chart several times. and even made his own notes. he said based on the back to back to back  inspection that there were MANY differnt and some even major changes, that possible a "regular neuro or radiologist" might miss.

he did a Thourough physical exam. and based on his findings he has declared it Officially MS!

At this point though Im still in a quasi stage, since I seem to have had exacerbations and remission on and off most of my life (which no one added together as the possibility of being 1 disease rather than several different conditions) He has said that to put me in a standard class wouldn't quite "fit" he has said that it is of course in a secondary course because of all the troubles I have had previously, he said that it is progressive because I haveand I don't seem to recover well (if at all) from the "last" exacerbation (my left leg is in almost constant pain I cannot bear weight on it and it's hot/cold/numb/tingly, I drag the foot most the time,and I use mostly my hip to move, and even that hurts as they have detected osteoarthritis in the lowe back and both hips)  I also have new symptoms showing up that I hadn't before. but he also said since I am having The new symptoms as well as activation of older symptoms occuring that he would still classify me as a form of relapsing remitting. So he gave me a course of oral prednisone and has begun treatment fo me as far as the DMD's rather than going sub cu as before with the copaxone and the severe adverse reactions to it he has begun Avonex therapy, AND as a great posting to bring you all current I got my training nurse out here and Today was my VERY first injection! This is nothing like the copaxone... sure the needle hurt a bit, and there was some burning but absolutely NOTHING compared to what I had before and I am Pleased as punch in the hopes that this will continue to be just a once a week minor inconvience and that the relapses slow down and maybe even stop as the progression of the disease slows down. Sadly, I won't get back what I have lost but at least I won't lose more (LETS ALL HOPE) If on the other hand it doesn't seem to change the course of my "troubles then he will have to fully classify me as secondary progressive and from there I don't know what I will do!

In the meantime though lets all hope this does do what it is supposed to, and that there will not be any fears of crossing that SP bridge.

Thank you all for reading and letting me vent, I know it's been a long post and Im sorry but I just wanted to update as much as I could.


Gabi, Community Member
8/31/10 4:48am

Well just a quick update here. I been on the avonex anout 2 1/2 months and luckily only had one bad flare with it, (not sure if I am suposed to still have flares or not, forgot to ask my doc) In any case it's the flu -like symptoms dragging me down I get my shot on fridays and it's usually Tuesday before I even start to feel 1/4 human again.

I like my doctor, he is ok and all but he never returns my calls he has his nurse or receptionist do it and she is friendly but quick I never even get the chance to let her know I'm having a problem with something and NEED to speak to the doc a friend of my daughters actualy goes to the same exact clinic and she say her calls are ALWAYS retured, usually in a matter of minute if not till the next day, her doc is female and LISTENs to her, she doesn't have to go therough the resident and have all the standard neuro tests and then have to go through the doctor andhave them done again.

In any case at this point im not fdoing too badly but I could be doing a whole lot better!

Thats all for now!  it's late and I need to get to bed.





liz, Community Member
5/11/10 1:22am

my sister in laws husband has been in the hospital for over a month due to lost of muscle strength so he's basically paralized now from the waist down and no doctor here in san diego can figure it out they first thought it was ms and now they have ruled that out so what can it be if its not that? he has gone through so many treatments and so far nothing has worked. blood tests, spinal fluid has been taken over 5 times. scans of the brain the whole body and they cant find a single thing we need answers and they have nothing to say and its so frustrating

Vicki, Health Guide
6/10/10 12:33pm

Hi Liz,

It is frustrating.

They have done so much, surely they will reach a conclusion before long. Your husband must be having such a difficult time going through all of that. They will find an answer before long.

Have patience — and good luck.  Let us know what the answer is.

Stevie, Community Member
8/28/10 7:35am

Has he been tested for Guillain-Barré syndrome?  That's what my father-in-law was diagnosed with when he became paralyzed from the waist down.

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By Gabi, Community Member— Last Modified: 12/26/10, First Published: 03/28/10