Sunday, May 15, 2011 T Dugan asks

Q: Undiagnosed RRMS and now SPMS or straight PPMS?

The more information I read the more confusing this seems. OK so I read that PPMS usually starts with difficulty with mobility and in the late 30's or 40's. I have had this difficulty with walking for about 4 months now along with numbness, itching, pain, in arms and legs. I also believe that I have the MS hug going on as well. Last night it felt like I was having a heart attack caused a level 6-7 pain. I had the same thing 2 years ago and was put through all of the heart tests and the pain I was experiencing could not be explained as I am heart healthy according to docs. I am hoping for a break from these symptoms as RRMS would offer that in my future as opposed to the PPMS. So I guess what I am asking is has anyone out there reached almost 50 and had what now was probably RRMS symptoms but didn't initiate diagnosis until it turne into SPMS. I know that the MRI will show evidence as to which is which, but I am impatient and needing as much information as possible. Thank you in advance. T
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Answers (2)
Lisa Emrich, Health Guide
5/21/11 1:41pm

Hi T,

 

I have encountered other patients who did not consult a neurologist until their disease had transitioned into Secondary Progressive MS.  It does happen.

 

Unfortunately the diagnosis process can take time for some people.  It took years in my case but only days for some others.  Hang in there.

 

Lisa

 

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5/21/11 5:25pm

Thank you both for the reponses. It is really frustrating just waiting while knowing that if it is MS the research says the faster you address the better. Undecided

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11/22/11 4:54pm

I went through difficult symptoms for at least four to six months whereas my primary physican could not explain and finally she referred me to a neurologist. But, it had gotten to the point where I was stumbling and falling all the time. I'm on copaxone right now and still some days I'm in so much pain and my symptoms are as they were before starting therapy. I'm trying to give the medicine a chance to work before looking into other methods, I'm tried of hurting.

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5/20/11 5:06pm

I was diagnosed with RRMS 20 years ago and 3 months it was changed to PPMS.I have always had difficulty with walking but now its worse then everand my coordination is way off.Good luck to u.

 

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By T Dugan— Last Modified: 08/21/12, First Published: 05/15/11