I have had difficulty accepting the diagnosis although the symptoms i am experiencing are quite severe for this early on. Ive had the condition for 4 years now and the worst I experience was in the beginning.
I slowly began losing the ability to walk. This continued for over a year, reaching a point where i could not walk without holding on to walls.
Going doctor to doctor who one after the other said the same thing although my MRI confused radiologists in that the brain looked like MS but the spine looked like something else.
The LP resutls did not make it easier since the oligoclonal bandss were negative. Protein was very slightly elevated.
Hence, the course did not fit, the bands make me in the 5% of people.
What did fit is, the neurologist exam, the brain mri, and my age.
So along with all of those issues, i know learn about role of veins which to me makes perfect sense. Thus rendering MS as a secondary condition when accepting the hypothesis of CCSVI.
I hate the fact that autoimmune is attached to anything that is not understood, and realistically i do not believe that anything happens without a cause and no process continues without something actively causing it.
But now, having what appears to be a cure, i am conflicted as to what is actually wrong with me.
Although i am much better than i was that first year, i am fairly disabled from the things i loved to do. I am still unsure as to what is wrong with me, i am trying to get the CCSVI screening done and trying to keep going.
I have not been on any MS medication although Prednisone helps me greatly. Specifically prednisone helps much more that Solumedrol which neurologists put me on before giving me what helps.
Thank you for letting me vent my ongoing frustrations and concerns and i would very much love to hear others' experiences.
It seems that next to nothing is really known and to my new found convictions of blood casaul link to this condition i am more frustrated that efforts, up till now, have been spent for the wrong cause.
Stripping our immune systems is not the answer it seems now, but i digress...
Please share, thank you.