MS or just Transverse Myelitis?

I had an initial attack of transverse myelitis which came on slowly over a few weeks in October 2011 (lesion c4-c7 no enhancing). LP normal. NMO-iGg normal x2. All other labs normal. It left me with severe difficulty walking as well as muscle fatigue in my arms and hands and both legs but primarily my right. Steroid treatment yielded only minor improvement overall with 1,000 mg solumedrol for 5 days. I was unable to do more than walk around my home and required a wheelchair for any distance.

Symptoms worsened quickly in February, but no new lesions so I was sent home and told it was stress. Then in June, another MRI for follow up and I was making progress and walking longer distances (warmer weather??). During the summer however, I felt great and walked so well I thought it was mostly gone. Then in October, the symptoms slowly progressed again. I have good days and bad days, but since October have had few good days an am ordering a wheelchair as I feel I am back to ground zero.

My question is, could it be a real relapse in the spinal cord, but not show up on MRI? Is it typical to have months where you are nearly normal and then periods of really awful symptoms like before with no new relapse activity? I heard spinal lesions are harder to detect than brain lesions, and I just wondered why my symptoms returned and stayed so suddenly.

Thanks in advance.

Jennie

[maxthecat43]

It may be further axon degeneration in the area of your original lesion.  Feeling good in warm weather is uncommon (though not unheard of) in MS.

I'm sorry you're having such a rough time... Whether you have MS or not, folks here understand.  I hope you stick around.

[Deb61]

Yes, spinal lesions are harder to detect.  What was the strength of your MRI machine?  Was the MRI only of your spine?  It may be necessary to get a second opinion if you have new symptoms severe enough to warrant a wheelchair.  

[maxthecat43]

It may be further axon degeneration in the area of your original lesion.  Feeling good in warm weather is uncommon (though not unheard of) in MS.

I'm sorry you're having such a rough time... Whether you have MS or not, folks here understand.  I hope you stick around.

[Luvmykatydid]

Thanks- I have an appt with the neuro in a week, so hopefully we can discuss my symptom changes without MRI changes. I do know that symptoms do not correlate well with MRI. I do think it's just the joys of the nebulous and unpredictable world of demyelinating disease.

[Sierra28]

I am interested to hear what your neuro has to say, as I too have a TM diagnosis but worsening of symptoms of late.

My onset of TM was a year ago and was mostly limited to my lower body, particularly my left leg and groin, though I experienced some numbness elsewhere, as well as paresthesia and nerve pain all over. I was extremely weak and tired, but was mostly mobile.

I gradually improved over the course of months (though the fatigue and some neuropathy never went away) but this past September experienced a major setback when my left hand became numb and I began experiencing significant pain in my hands and arms, still mostly on the left side. My arms are very weak and I battle constant nerve pain in my hands.

My MRIs have always been clear - no lesions - since the very beginning. They were all done on the lower powered machine, however. My bloodwork is inconclusive and my nerve tests are negative. My current neuro is having me wait it out for three months then come in for retesting of bloodwork.

I'm waiting to get in to get a second opinion from a different neuro. I'm still not convinced this isn't MS in the making, as is my GP. I do realize it may be a long time before I know -- if ever.

I hope you find the answers you need -- the waiting and wondering stinks!