Diagnosis of PPMS vs RRMS

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Diagnosis of PPMS vs RRMS

Postby David1949 » Tue Aug 31, 2010 11:00 am

Does anyone know how neurologists determine what type of MS we have? I was dxed with MS about 15 years ago. The neuro sent me for an MRI which came back positive for MS, (little white spots on the brain). He told me in no uncertain terms that I have MS, although he could not or would not tell me what type of MS I have. He wanted to put me on Betaseron. I said no thanks. I saw a 2nd neurologist about 7 years ago. She sent me for a spinal tap which also came back positive for MS. She also wanted to put me on Betaseron but again I declined. She was also unable to tell me what type I have, even though I told her that I have never had a relapse or a remission.

I've heard that neuros don't like to dx ppms because the insurance companies won't pay for the meds unless you have rrms.
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Re: Diagnosis of PPMS vs RRMS

Postby NHE » Tue Aug 31, 2010 3:46 pm

Hi David,

David1949 wrote:Does anyone know how neurologists determine what type of MS we have? I was dxed with MS about 15 years ago. The neuro sent me for an MRI which came back positive for MS, (little white spots on the brain). He told me in no uncertain terms that I have MS, although he could not or would not tell me what type of MS I have. He wanted to put me on Betaseron. I said no thanks. I saw a 2nd neurologist about 7 years ago. She sent me for a spinal tap which also came back positive for MS. She also wanted to put me on Betaseron but again I declined. She was also unable to tell me what type I have, even though I told her that I have never had a relapse or a remission.

I've heard that neuros don't like to dx ppms because the insurance companies won't pay for the meds unless you have rrms.


The graph below is the standard thinking on the different types of MS. Note that it doesn't show PPMS but that's sort of like SPMS without a proceding RR phase.

Image

I guess that a good question would be how are you doing? Have you had distinct relapses? Have you experienced any accumulation of disability? What have you been doing for your MS diagnosis all of these years, e.g., diet and supplements, etc.?


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Postby David1949 » Wed Sep 01, 2010 10:13 am

I have had zero relapses and/or remissions in 15 years with MS. I don't take any drugs for MS. In the past I followed the Swank diet although not for the past few years. My EDSS is about 5. I can walk 100 yards without a cane , brace etc. With my othotic foot brace I can go about 1 mile, slowly.

I would say the progress of the disablilty is like what you show for SPMS but without the early ups and downs. The only thing I've had that was a deviation from the line was the electric shock symptom which began just before my Dx. Happily that lasted only a week and then never returned.

My trouble is mostly, drop foot on the left foot and weakness in the left leg. There is some numbness in the left hand and weaknes in the left arm, plus some loss of balance.
My short term memory seems to have suffered somewhat. Its a strange thing. Sometimes I remember trivia from years ago, but I quickly forget important things that happened a few week ago.
The left leg twitches at night sometimes just as I'm about to fall asleep. But since I quit drinking pop that problem has subsided.
Fatigue hasn't been much of a problem for me. I need the occassional afternoon nap but probably no more than the average 61 year old geezer.

If I could get rid of the drop foot and weakness in the left leg, I'd feel pretty good. I can live with the other issues.

My own self asessment is PPMS based on the absence of relapses. Does that seem reasonable?
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