My MS History

[Bkaboo]

15 years ago, at the age of 24, I went to the ER with numbness from my feet to my lower chest. I had MRIs of my brain and spine, and I was admitted to the hospital with suspected MS. The docs told me that I had lesions in my spine as well as some spots in my brain. I was given solumedrol for a few days, and I was taught to self-catheterize, because I could not urinate.My symptoms resolved, and I left the hospital. One month later, I lost vision in one eye, which lasted for several weeks. It then resolved. I went under the care of a neurologist, who diagnosed me with R/R MS and put me on Avonex. I stayed on Avonex for several years and then lost my medical coverage and simply did not see any docs for several years.

Now, at the age of 39, I have seen three different neuros, and they did some testing, including brain and spinal MRIs. They all say that I do not have MS. I still have numbness in different parts of my body, but the neuros say that is due to disc and spinal arthritis problems. The neuro who originally diagnosed me 15 years ago is no longer in practice.

Is this a plausible scenario?  Can a person have spinal lesions and 15 years later have no spinal lesions?

[jensequitur]

I do have to wonder what the strength was of the MRIs you received recently, compared to the ones you had several years ago.

A follow-up MRI should always be at the same strength as the one that you were diagnosed with last time. As imminiesco said, spinal lesions are very difficult to find on an MRI. I've heard experts say that if you're not using a 3T MRI to image your spine, you're wasting your time.

[HVAC]

I have had MS for almost 50 years and I have may be three lesions. Where my lesions are is classic MS. I have also had little symptoms other than the ones I had from my attacks as a child. I only see a MS Specialist every two years.

My first question would be was your past neurologist a MS Specialist? My second question is are any of the new doctors a MS Specialist? If not on the second question my next neurology appointment would be with a MS specialist. Did the doctors say you definitely did not have MS or are they following you over time? When you go to a new neurologist you usually start at square one.To neurologists it is not MS until they decide it is MS. The other issue from a neurologist's perspective is why you stopped taking the avonex and were not being followed closely by a neurologist.  I get the job thing but a neurologist might say well you have been off the avonex and you have not progressed so may be it is not MS.

I varied from the script. My symptoms started in childhood and I stopped going to neurologists when I was 16. They knew I had neurological problems but not MS. My GP did a neurological exam when I was 44 and thought I might have MS. She sent me to a neurologist. He thought it was MS but was moving so he did not diagnose me. The next neurologist tested me for MS and all the test showed MS. She said I absolutely did not have MS.

The next neurologist said I had MS but would not diagnose me. I had two others say it was probably MS. I went to a  MS Specialist and he said nothing about MS except to follow me for two years. If I had not had a positive Lumbar puncture I would not have been diagnosed. I went to six neurologists in two years. I was followed by a MS specialist for a year and a half. What puzzled them was having symptoms for so long. I was so used to my symptoms I did not know they were symptoms.

Alex

[immisceo]

Spinal lesions are notoriously difficult to make out. Many scenarios are possible here: the original neurologist was better at seeing them, the original neurologist mistook an artefact for a lesion or lesions, the most recent three neurologists could not make out the past presence of lesions because they have been repaired to some extent, or the lesion/s were never there to begin with hence the seeing them now. It's a tough one.

But, the thing is, the presence or perceived presence of these spinal lesions would not (or should not) have been all that went into diagnosing you originally. I presume you had clinical exams, different blood tests, possibly a lumbar puncture, a brain MRI, and your history would have been taken. A discrepancy in one of those findings between now and then may trigger a review or redo of those particular tests, but I wouldn't have thought it was sufficient to roll back a diagnosis on its own.

It's not impossible to have structural issues to the spine in addition to MS. On the other hand, after 15 years with MS, it would be expected that more lesions (or evidence of them) would be seen on the brain, rather than fewer. I have to admit, I'm flummoxed! I can only imagine how you must be feeling. There are many people in this community who may be able to provide a more informed perspective (or catch me if I mispoke with any of the above). I would say, however, that due to the time of year, don't lose heart if you don't hear from too many people at the moment. In the mean time, I hope you're still able to enjoy the season even with these concerns understandably weighing on your mind. You're not the only person on here who has been dealt the unique head-spinner that is the 'un-diagnosis'.

One hopeful note - Avonex has an excellent safety record, meaning that if you do have MS you did yourself a favour by taking it for those initial few years (early treatment is important), and likely did yourself no harm if you don't have MS.