MS re-diagnosis

[lyuh]

I was diagnosed with MS in 2000 at the age of 58.  My symptoms were numbness in my face, feet, and legs, an uncomfortable almost tickling sensation in my arms and legs, balance issues, and tripping on flat services.  I also had frequent bouts with bladder infections most of my life.  I also had bladder and sometimes bowel control issues.  The Neurologist sent me for an MRI which showed several lesions on my brain.  I did not have MRI's of my spine at that time.  He also did a spinal tap, a nerve conduction test on my feet and legs, a test to rule out diabetes, and an ANA blood test.  The ANA was negative, as was the diabetes study.  The doctor, who was also working at a teaching hospital diagnosed me with MS based on the MRI and the other symptoms present.  He also put me on a course of Methepredisone which relieved the current symptoms enough to get me back on my feet.  He brought in several students from the hospital and I allowed them to look at all of my test, examine me and consider a diagnoses.  They all concurred with the Neurologist without knowing what his diagnosis was.  I was put on Copaxone at first, but had several relapses and decided on Rebif.  Since starting on Rebif I have not had a full relapse for 7 years.  I have to deal with heat intolerance, fatigue, and balance issues.  I have severe Neuropathy in my feet and lower legs.  I also have seronNegative RA, and moderate Fibromyalgia.  I moved to another state 5 years ago and then returned which meant a new doctor because my doctor here had retired.  My new Neurologist that I have had for 3 years re-diagnosed me because he had seen several of my previous doctors patients who were misdiagnosed with various neurological disorders.  This Neurologist says that even though I have lesions on my brain and high levels from my spinal tap that those can be from my age.  He further says that because I haven't any lesions on my spine and my ANA is negative that he can't give me a definitive diagnosis of MS.  However, he is reluctant to take me off the Rebif.  My question is should I see another Neurologist or just keep on the medication without a firm diagnosis?  Will the Rebif do me any harm If indeed I don't have MS?

[HVAC]

If it were me I would get a second opinion with a MS Specialist.

Alex

[kwarendorf]

Hi & Welcome :-)

In reading your post the results of your Spinal tap were unclear to me. You mention that you had it done for the original diagnosis, but don't mention whether or not they found oligoclonal bands unique to your CSF. Later you mention high levels from your spinal tap. Did they find unique o- bands in your CSF?

I would definitely seek a second opinion.  You do not need to have spinal lesions to have MS. I have also never heard of anyone relying of ANA to make a diagnosis. I would look for an MS specialist in your area.

Kyle

[karryon55]

Hi there & welcome to the forum.

I have only just been dx'd myself so hopefully someone with more experience can help you more with your question.

I did want to mention something to you though. It's something that my Neurologist has said to me. "Nothing in Neurology is ever 100% certain." I know any good Neuro will continue to check into things with any patient over time. I also think what has happened to you has certainly happened many times before.

I think in regards to seeing another Neurologist to get a definite dx. I would have to say it probably wouldn't hurt "if" that's what you want to do. If you just see them for a second opinion & hear what they have to say then you can decide on where to go from there. If you're life is not going to be impacted on not having a definite dx & you don't want to go through lots of testing again I can fully understand that also.

It is confusing that this Neuro has said not MS & yet he is suggesting you remain on Rebif. It suggests to me that he himself hasn't totally excluded MS. Have you asked the Neuro what they think you have? I would be concerned like you that Rebif is doing you more harm than good.

I'm sorry I don't have any answers for you. Hopefully someone with more experience will see your post soon. I'm sorry to hear all of this is happening to you.

Take care,
Karry.