HELP! - Possible MS? Neuro not giving any Treatment...

[m2bkf4life]

2 years ago my wife was diagnosed with Fibromyalgia - a crap diagnosis in her opinion. Tired off and on, pain now and then but could function normally with some extra rest and naps.
8 WEEKS ago she went on STD from work as she could not make it through her nursing shift anymore. Original STD was for 4 weeks. Instead of getting better she has worsened and developed symptoms associated with MS. About 3 weeks ago we saw Neurologist in town...her symptoms over last few weeks were vision problems, balance issues, right leg tingling and sometimes numb and it was now moving over into top of left leg, footdrop, exhaustion, mental fogginess, etc...He did a pin prick test and suspected the problem to be around C7. She had a Brain and full spinal MRI done that night. Results showed no lesions in brain but "degeneration of the cervical spine". She had a spinal tap done and lots of blood tests. We are still awaiting those results. Why we wait, she is worse and worse each day and more areas of her body are being affected. Now both legs are completely affected and tonight I can literally thump her with my hand on her leg and she can't feel it. The tingling and numbness are also in her hands and arms now and today she had shooting pains from her armpits to her hands. She can barely walk and lives on the couch and bed. We read Dr's file last time we were in the office and he originally wrote that he suspected Transverse Mylitus...but had told us if he was a betting man he would suspect MS. We asked for some meds to make the progression of whatever this is stop and/or to ease the pain, etc. They said it's catch 22 - If it's not MS, but rather the transvers mylitus virus, and they give her steroids, then they have weakened her immune system (and her white count in already in the low 300's). So we need to wait for results. It's been 5 days and she has worsened more and we have 9 days to go until the consultation for the results. To make matters more confusing we called our family Dr (that referred her to the Neuro) and she said that Transverse Mylitus is more a pre-cursor to/or of MS and it's used for insurance companies until an official diagnosis of MS can be made. And 80% of people with Transverse Mylitus have another occurrence of it at which point it is diagnosed as MS. My Question - WHY ISN'T THE DR GIVING HER SOME TREATMENT NOW? (He is considered an MS expert, by the way) We are very concerned of permanent damage at the rate that "whatever this is" is progressing. Other MS patients are in shock that she has not yet received any meds to help..steroids at the very least. I FEEL LIKE we are just being given the run around and day by day my wife is drastically losing more and more of her ability to function. IS THIS NORMAL TO JUST HAVE NO TREATMENT WHATSOEVER AS SHE WORSENS ON A DAILY BASIS? Please, Please Help!!!!!! thank you....

[Dr_prakesh]

I understand your frustration, however we need to know what we are treating before we can know how to treat it.

That being said, the immediate treatment of acute transverse myelitis is often the same or similar (steroids) no matter what the cause.

Please could you clarify the findings of the spinal MRI...is the spinal cord compressed or is there evidence of a lesion within the spinal cord?

Is there a result of oligoclonal bands?

Have somatosensory evoked potentials been tested?

Thanks in advance

[m2bkf4life]

Thank you for you response. In the mean time, my wife's condition has continued to worsen. Although she has never been completely paralyzed, her legs are much weaker, with pain and tingling. Her hands are also effected.
The LP did come back positive of Oligoclonal IgG bands (5 of them) A second MRI was clear with the exception of degenerative changes.But no lesions. An EMG was normal, ruling out pinched nerve. The obvious others were ruled out--west nile, lupus, RA, Lyme, Syphillis, Gilliune-Barre (poor spellling) Her serum WBC has been low varying been 3.4 and 5.2. But these symptoms have gone on for almost 4 mos unabated. There was no acute illness such as resp infection, fever prior to all of this. . The onset was not acute, just progressive and never involved coma, or even a headache.
THE QUESTION IS...REALLY....HOW CAN IT BE ANYTHING BUT ATYPICAL MS (PROGRESSIVE)
Even if a Dr isn't quite sure, surely they must suspect that, can't they just tell the truth and if they're wrong, great! Or cant they even let us know the very high probability of MS.
.After one dose of IV solumedrol, there was some relief for 10 days, but things were worse when it wore off. (3 doses of 1gram each)
Isn't it true that in primary progressive MS, lesions may take quite some time to show up on MRI.
No Evoked Response testing has been done.
Thank you for you time

[MG (Admin)]

Well MS is still possible but certainly not definite in this case.

Evoked potential testing (VEP, BAER and SSEP) would be useful.

PLease could you summarize the results of the bloods and CSF studies (other than the oligoclonal bands which I see were positive).

More importantly I would like you to send me the full transcript of the neurological exam performed by the neurologist. Does she have anyone in the family with a similar problem?

Please be in touch.