I have a new name now, NeuroNixed Craig. Why you ask? Been a long time since I've been here and after coming back, for soon to be revealed reasons, this is the only place I feel like I am comfortable. So, here is the Reader's Digest Update.

After my near fatal brain stem stroke a year ago this month, I thought things were moving along quite well in my adaptation and adjustment to the challenges of both my neurological disease progression and residual effects of the stroke. BUT! Life suddenly said, "AAAAAANNNNT! Wrong answer and thank you for playing !"

It started in September, just some slight noticeable changes in my symptoms like small involuntary movements of my limbs and neck. This coupled with progressive vision problems like severe double and blurred vision, was starting to add up to something sinister that only my outstanding PCP would put together. The symptoms got worse and started to involve my neck, shoulders, trunk, and legs. I'm sure I was pretty amusing to watch for other people. I know I would have been amused.

A serious talk with my ophthalmic surgeon regarding my impending cataract operation complicated by the involuntary head movements would make the operation very dangerous and near impossible. He suggested looking into meds for Parkinson's to settle me down enough for the operation. He faxed his concerns and findings to my PCP for further review.

During my appointment with my PCP regarding the frustration of these worsening spasms, muscular "explosions," and involuntary movements 24 hours a day, led him to perform some neurological tests. He excused himself from the exam room, returning 15 minutes later rather concerned. He had conferred with a neurologist and was told I should see a neurologist as soon as possible. My PCP said he was "very concerned," and even gave me his personal cell phone number to call him any time with concerns or questions. OMG!

I was scheduled in an unbelievable three days for a full consult and examination by the neurologist. My wife and I were there over 2 hours and 45 minutes. For the first hour the neuro simply talked to both of us and asked questions about my history, family, etc. Then he simply performed only four (4) simple tests on me. The final request, for me to stand and take two steps. I did, with great difficulty, and he said, "sit down, I've seen all I need to see." So, only four simple test? THAT was scary!

His conclusion was confident, up front, and no hint of sugar coating. I have a very severe and serious degenerative brain disease involving the Cerebellum and Brain Stem. Specifically, Cerebellar Degenerative Disease with Ataxia, Spinocerebellar Atrophy with Ataxia. There is no cure, treatment, and actually unlike Parkinson's, no meds to help with symptoms. The prognosis is the worst possible with continued and unpreventable progression. (I know what you're thinking and yes, MS is a common misdiagnosis initially and a strong genetic linkage is involved which doesn't follow the normal familiar MS path.)

All they can give me is a strong narcotic tranquilizer to knock me out and stop the movements so my body can rest. Three pills a day, so he says. I take one and am comatose for 14 to 16 hours with terrible side effects. Now I try to get by with a half or quarter pill but it doesn't help much. Just "coping" for me is equal to a normal person's "great day."

I know this is a real bummer to share with you but I felt you have been with me for years (2000) now and deserve some of the story of what's going on. I have decided to close my Internet business. The physical symptoms make working on a computer very difficult; blurred, double vision, uncontrollable arm and hand movements make my cursor crazy. The simplest task now takes forever and then with questionable results. The exhaustion from the slightest effort is overwhelming. My old "drive on and through it" mentality doesn't work this time.

There ya go! Other than this "tad" of a challenge, everything is just wonderful. I really don't know where else to go on this forum and feel the symptoms and my hx are close enough to still be of value to share.

Hi Craig ... long time no see.

Sorry to hear about the recent dx, and the lack of treatment available. Seems they just don't have this brain stuff figured out for us yet, eh?

Wishing you well, and thanks for the update.

Cherie

Santaaaaaa!!! Craig, so glad to see you back here, where you belong. So sorry for the horrible DX that brings you back.

Come on back in and join us!!!

Thanks for thinking of us and please take care.

Hi Craig! Nice to meet you. I think you'll enjoy the MS forum and hope you'll stay with us here. We even have a sub-forum called The Stumble Inn where we can get a little wild and hairy!

I'm so sorry to hear about your recent dx. You seem to have a great attitude about it. What else can we do but trudge on through and try to find the little things that make us smile. I'm so glad you have a good Neurologist who isn't afraid to be upfront and honest with you. Too many of us have substandard doctors who just see us as a number.

Have you looked into the voice activated software that responds to your voice and eliminates the need to type? I know others here have talked about it and I can't remember the name of it (seems like it's "Dragon" something or other). That may be a good way for you to easily participate in the forums here.

I'm glad you returned to this site.....it's been a lifesaver for me and I have made so many wonderful friends here. Hope to see you around more often.

Hi VariousNamesCraig...good to see you again, but sorry to hear of the circumstances.

Hey Craig_______, A rose by any name smells sweet. Sad for the reasons, but glad to "see" you again.

Hi Craig, nice to hear from you, sorry you're going through so much.You're always welcome here with us.

diana

Nice to meet you Craig, that's one heck of a story! One day at a time, you know your body better than others.

Craig,
It figures they would come up with something lovely to cover all your symptoms so they wouldn't have to make something up!

I hope they have finally reached a true diagnosis, as much as it sucks, just for your peace of mind, but after all you have been through, I'd be waiting for "AAAAaannnnt!" and the next round!

Hugs to you. Stick around, together we have enough to go around!

Craig - jeez, sorry it's been such a rough row. Good advice from Kitty about Dragon. The new version is well worth a few bucks and a little time to *train* it - I had the old one and even that was really cool.