Habenoughyet wrote:I agree, I was dx'ed 14 months ago, I only started "feeling" the symptoms 16 to 18 months ago...My right side, weakness in the arm & leg, before that I felt nothing. I was able to walk or run without a problem... Today, I use a cane and an prosthesis to walk around. Progression has developped rather quickly in my case... Hence the reason why I seek "any" treatment ASAP....
Here is my experience with a confusing diagnosis;
Looking back, my first symtom was probably L'hermittes 4 years ago.
Next was an Optic Neuritis in May 07. In Oct 07 I started with motor deficits and balance problems.
In Jan 08 I had bladder issues and steady , progressive motor changes.
I was diagnosed with RRMS in May 08. Had numerous other deficits-both motor , sensory, bowel etc start in summer of 08. I have been on Copaxone since July 4th 08.
My Optic neuritis seemed acute but every single other neurological change since then has been slow and gradual but changing fast. The only two things that ever improved were some sensory numbness and vision improvement following ON.I have probably 90% of all MS sympoms I have ever heard about except cognitive , speech and swallowing are all normal.
My neurologist tentatively changed my diagnosis to PPMS in Dec 09. She says I am changing much more rapidly than most with PPMS! I was sent to another Neuro for a 2nd opinion and had all tests redone and more. I saw him last week for a summary and he feels I have some relapsing components and progressive components to my disease course. He would not call it either RRMS or PPMS. I get worse every couple weeks and have for 3 years. I am now in a wheel chair and have a self assessed EDSS of 7.0 .
I am also feeling like I have no time to loose and will see my regular Neuro in 6 weeks. It will be then that I tell her I'm off to Poland to see Dr. Kosteki in Sept 2010. I can't wait to see her respond to that .
I will provide a very indepth report on the entire experience including great detail on how I improve or how I don't improve .
I believe that if there is such an animal as PPMS this is what I have. I have modest expectations and hope that my progression slows or stops for any period of time post liberation - if indicated.
I will keep this forum updated when I take my voyage to Poland.