newly diagnosed with ppms
had symptoms for 4 years and was finally diagnosed with ppms in june over the last 4 years my mobility as got so worse that i rarely go out now . can anybody tell me if there is treatment that can help. i am taking pregablan which helps with pain but my leg feels like a dead piece of wood that wont lift when walking which in turn makes me trip. please can anyone offer me some kind of hope
Hi @linda45 , unfortunately, there is no present treatment available for progressive variants of MS. Although, there are some treatments that are in the development pipeline. At the moment, we just have to manage the symptoms, with medications and/or therapy. There's some details about Primary Pogressive MS here :- http://support.mstrust.org.uk/file/primary-progressive-MS.pdf Having only been diagnosed in June, you are still on the post-diagnosis rollercoaster ride. This takes in various emotional phases :- 1. Shock and Denial 2. Pain and Guilt 3. Anger and Bargaining 4. Depression, reflection, loneliness 5. The upward turn 6. Reconstruction and working through 7. Acceptance and hope You can probably determine which phase you have reached, although this ride isn't direct from 1 to 7. Expect to double-back and revisit phases. So, please be kind to yourself. Worry and stress antagonises our MS and are best avoided, no matter how hard you're finding the present circumstances. Hope this helps
Hi @linda45 - I was diagnosed PPMS over 22 years ago. I am currently not on medication for anything, and try to handle this as best I can. There's always the question of exactly HOW to 'not' stress... If you can - I'd suggest getting an occasional massage, either by a professional practitioner (that you pay for!) or a partner if you have one - makes for a relaxing way to get in a moment of stress-freedom! It will help with your breathing and to move to calm things down a bit.