[NeuroNixed Craig]

For years I've been visiting the MS board and that turned out to be a gross misdiagnosis. They changed that to "suspected" Hereditary Spastic Paraplegia for a while but I am NOT going though genetic testing just so some neuro can confirm a diagnosis. My symptoms and disability continued to progress rapidly.

Then I suffered a near fatal brain stem stroke, unrelated to the neurological disease. Doc's freaked because they couldn't tell if my symptoms were stroke or neuro disease related. Took about 8 months to get back to about 90% prestroke base-line recovery.

Then I started exhibiting progressively severe involuntary movements consistent with Tardiv Dyskensia and Distonia. Now categorized as nonspecified Dyskensias family. I was referred to a top level neurological diagnostician who finally diagnosed Dyskensias, Dysarthria, Spinocerebellar Ataxia with Atrophy, and Cerebellar Degenerative Disease with Ataxia.

All accompanied by severe and increasing symptoms including chronic pain at a mean level of 8+, sleep wake irregularity disorder with sleep deprivation and increasing cognitive degeneration. What does this all mean and why don't I fit in anywhere on this forum?

Simply because of the complexity of my case. There is no treatment even through the use of strong meds, and this is a terminal situation. Med's are not effective because the primary disease is in the cerebellum and to off set the severity of symptoms requires that I need to be almost unconscious. Not how I wish to live.

In the last six months I've had two prominent neurologists tell me not to bother making further follow up appointments as there is nothing they can do. My PCP who is absolutely awesome, has reached the end of what he feels he can safely treat referring me to a prominent Pain Management Specialist and Clinic. He told me I was one of 3 cases he has seen in his career and had no advice or options. He personally referred me by telephone call, to the top Physiatrist in our part of the state. I moved up in the world because he said I was one of 6 cases like mine he had seen in his 35 year career. Are you getting the picture yet?

He is a doctor of last resort although he is doing research on my case and wants me back in 6 weeks to review his findings. Cautiously optimistic is the best I can do. So I see no real place on this, or any other forums I've visited, with a category dealing with terminally diagnosed people. I do reserve the right to be totally wrong though. Any suggestions, links, referrals to other forums, will be greatly appreciated.

I apologize for the length of this post but I don't know how else to get the points across for one to comprehend my challenges. Thank you for reading.