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Hi all,
I have been diagnosed with PPMS however i do not have any spinal lesions, i have lesions in my brain which are inactive and ive not had any new ones at all. My PPMS is progressing rapidly and i was curious if there is anyone diagnosed with PPMS and not had any spinal lesions or any new lesions in the brain at all? Is there a chance i may have been misdiagnosed? I have many MS symptoms and my lumber pucture was positive. I have severe walking and hand function problems.
Look into Lymes. Make sure you fine a dr. that will sent the blood work to lab named IGENEX for testing.
Hi. I was also bestowed with the PPMS ribbon. And I was Dx'd at 45 with no history of anything remotely resembling MS. No flares or relapses. Like almost everything MS nothing is definitive except for the fact that it sucks.
Have you had a lumbar puncture? That is one of the more telling tests.
At all costs stay AWAY from an EMG test. Extremely painful in legs and have had two MS specialist Neuros tell me that they don't use EMG tests anymore. They use evoked potential tests which are even more painful. To me on scale of 1 - 10 with 10 being most painful emg is 8 and evoked potential is 9. I have PPMS and a steroid Solumedrol does help me with pain and spasticity. Don't use any more cause Ocreavus does same with no steroids. Make sure your Nero is MS specialist cause it could be a big difference. Lastly, always ask the pain level of a test and if they characterize it as `It will be UNCOMFORTABLE` it will be extremely painful. Ask for medication before test.
PPMSers don't just get spinal lesions, just more often and that explains, from what I've read, why more disability occurs involving both legs and arms, which also depends on placement of the damage in upper c-spine. Steroids often do not help as less inflammation occurs in PPMS. Usually doctors take more time diagnosing PPMS because there usually aren't flares. PRMS in the US is now part of the PPMS dx now, about or just before ocrevus was beginning to be studied. There is no one definitive test for MS, as such the other tests are to rule out those diseases that mimic MS. Brain lesions can even occur as we age, so in my thinking, just my opinion, an emg is probably the most valuable test to rule out motor neuron diseases such as ALS and other peripheral conditions. A spinal tap should confirm central nervous system involvement. Lastly, a question, does your neurologist specialize in MS?
Do you have spinal lesions? @A MyMSTeam Member
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