OK! It's Me Again! UNDX Craig but different now!
 

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. :hug::hug:

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. :hug:

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.

Hi Craig...I think I remember you from MSWorld too! Its so good to hear
from you and to know whats going on. You have been on such a diagnosis
merry go round!:hug: Sorry that this is the hand you were dealt, you
have always been such an inspiration.

hugs to you.:hug:

Craig, I remember you, too. I am sorry your new dx sucks! You have definitely been through too much. I remember you as a kind and gentle soul and I agree with sox that you are quite an inspiration. I have thought of you and wondered what was going on and I'm sorry you couldn't come back and say things were great. (((Hugs)))

Sorry to hear about your diagnosis. Hope that you find a way to deal with the symptoms and that more help for you comes soon.

gmi

Hi Craig.....it's been awhile!! Nice "seeing" you again, but your newest diagnosis is really the pits. :( Hope you stick around for awhile and just remember that they really don't know what to do with us either!! Take care........:)

True. Just because we have a DX doesn't mean any good answers. We're like the Island of Misfit Toys!! (A Christmas/seasonal related post)

HUGSSSSSSSSSSSSSSS and nice to see you visiting! please stick around.. we will not bite... well we will see anyhow... lol

I remember you also, and sorry about the pain, the hardship of each and every day of yours! Merry Christmas, and hugsss,sarah

Hey, Craig buddy!! :hug: I want you to get UN-DXed again!!! This new DX is no good! Keep us posted and get a couple more opinions! :hug:

I'm with Wiz -- please get another opinion...preferably one with a happier outcome!

Stick around -- at least we can all be miserable together! :hug:

Craig! Good to see you, but, dang, what a drag. :mad: Hang on to that indomitable spirit and stick around anyway. You have been a great encouragement to many of us, let us return the favor. :) :grouphug:

Hey Craig! Good to see your'e back, but sorry about the new DX. Bummer to say the least, but like AMN said, you've always been a positive kind of guy and supportive of everyone, so we are here for you, too.

Take care and really glad your'e home where you belong. :grouphug: :)

Hi there Craig,
What a bummer.:( Nice to hear and see you again. I was so happy when they took the MS diagnoses from you, but to get another one that most of us have not heard, really stinks.

You are still the great guy we know you are, so please stay with us. We can support each other as usual. We listen, we care. :hug:
Hugs to you my friend.

PS: you being in computers, probably know about "Dragon Natural Speaking" software. I know Marc uses it and has it well trained. :)

Feel better and come back soon. We missed you. :grouphug:

craig,

i'm truly sorry to hear this news.
i remember you too.
we're here for you. just do the best you can. one day at a time.
:hug:

WOW Guys! Thank you so much for the warm comments of concern and support. I understand all of the suggestions for 2nd opinions etc. Well, you guys who don't know me, don't know that I pretty much exhaust all possible and accessible opportunities for clarification and confirmation before going public. My brain stem stroke a year ago did not precipitate this current situation and is unrelated to the disease pre or post stroke. The stroke simple being an unfortunate additional medical event to deal with in conjunction with what was already in process.

I will be honest with you all also, I'm very tired! I have been dealing with this roller coaster disease vs. diagnosis, 2nd and 3rd opinions, countless CTs and MRI's, blood work, and trips to Medical College of Virginia and University of Virginia neuro treatment/pain eval and management centers, since 2000. Not to mention the hours of personal research on the net. Either this process or I are getting old. I really think it's me!

Good news is my basically new $9,000 power wheelchair is being completely reconfigured so now I will be able to use it throughout the entire house. Much of this rebuild is due to me losing 52lbs. since late April (not intentionally either) and a rehab rep who really is "professional" in knowledge and practice. How refreshing! I should have the rebuild by the end of January. Although, I'm sorry to announce I will not be competing in the Olympics this year for the "Wall Walking" and "Furniture Bouncing" events. I seem to have drastically lost my ability for accuracy. BUMMER! I know!

Christmas was totally "AWESOME!" My son flew in from Chicago for 7 days and my daughter's family, including my 4 and 6 year old grandsons, were here from Thursday through Sunday evening. Exhaustion was the standard for me during the visit. I even stopped taking my medicine so I could spend quality time with my family rather than sleeping and suffering the side effects. I'll be keeping you guys informed although, not a frequently as before. Posting is very challenging and exhausting for me. This post took me about an hour to write, as an example. Oh well, Forever Forward!

Wishing you all a very Happy and safe New Year celebration.

P.S. I apologize if this looks familiar to some of you who post on other boards I visit. I find cutting and pasting the only way to convey my messages now vs. unique posts stating basically the same thing on each board.

This is a separate follow up to the suggestion of using a voice activated software such as "Dragon."

I know you had no way of knowing this but here it is straight up and possibly you guys could give me some suggestions and insight.

Since the stroke and even worse now, I have extreme difficulty expressing myself due to the challenging process of getting my thoughts straight then getting it out verbally. I don't know the name for it, Aphasia or something like that? To me, I sound like the stereotypical "retard" trying to talk. Wrong words come out vs. what I am thinking or mean. Since the stroke I also seem to spontaneously say "*****," "crap," and a few others. Speech is very halting, distorted, and with bad pronunciation.

Having gotten that out, can a software really learn to overcome these challenges? If so, I would be utterly amazed.

Thanks for the suggestions.

Nice to hear from you, again, Craig. Happy you had an awesome Christmas. :yahoo:

Welcome back, Craig! I'm sorry for what has been happening to you.

I hope your new year is filled with laughter, and lots and lots of love!



http://i489.photobucket.com/albums/r...y-new-year.jpg

hey
 

Craig, nice to meet you, so sorry that it is under such circumstances.

I can only offer support and a caring shoulder/ear.

Know I am praying that you can find the suitable meds to allow you to rest when needed. And that the docs will find a treatment to help you!

Come here often and visit. We have enough love to go around!

Hugs,
Deb

Software
 

No craig, the dragon speak and others like it will be useless as you have to train them for your voice and you have to have a pretty steady "sound" to it. In other words you have to say the same word the same way each time.

A while back, at the neuro office, there was a pamphlet for people with speech issues such as from Parkinsons. (sounds similar to yours) Call the support group in your area for parkinsons and see if they know about this program.

I think that the above will be much more useful. Sorry to rain on the parade with the dragon type programs, but hate to see you waste the money on them. The good programs go 140ish on average. Not cheap, albeit great tools if you can use them.

Hugs
Deb

Hey Guys!

Thanks for checking in on me. Since I made this post in December things haven't improved. In fact, I had left my old neuro, who I've been dealing with since 2000 and went to the new on in November. As a result of my diagnosis and prognosis, BOTH of them have told me there is no reason to come back and see them with the exception of an acute situation in the hospital.

Why you ask? Simple. There is nothing anyone can do. End of story, close the book, no more chapters to write. It's taken me this long for the reality of the situation to sink in and I'm still adjusting. My wife hit the wall and finally had to address the situation when the holidays were over, kitchen remodel was finished and things settled down to a point she couldn't ignore it anymore.

Bottom line, we are working with an outstanding estate planning attorney getting all of our financial assets protected and in order mainly so Medicaid can't bite us in the butt if I live long enough to have to go into a nursing home. In addition, the nursing home can't exercise creditor power and attach our assets leaving my wife with nothing.

Like I've said, I've checked the bottom of my foot and found NO blue ink date of expiration stamped on it so I'm betting the neuros have no more clue about that than anything else. We all know how that can be, right?

I'll keep in touch but right now I'm readjusting my life to "live it" accepting each day with whatever challenges it holds in store. The new motto in my house is, "go with the flow and listen to your body." I do!

:( Im sorry that you have been set free, and the MDs are not even asking you to come back for some maintenance or upkeep while you are still here. Even if you are here for 2 weeks, or 2 years or 2 decades, you deserve good quality medical care, and follow up for things like...pain management, symptom control, skin care, and so forth.

Please know that you are loved, and thought of. I will keep you in my prayers. :hug:

craig,
:hug: to you and your wife.

i'm truly sorry for the situation you're both in. you are doing the smart thing to work on your estate planning.

since your drs have let you go i'm wondering if contacting a hospice might help you and your family. your dr can write an order for hospice care. and that doesn't mean you're going to die on a specific date. they can begin caregiving at least 6 mos prior, maybe even more.

i know that hospice care is so excellent. please let us know.
my thought and prayers are going to you and your family.

So, there is no PT or anything or OT, for your speech, or issues?? just curious... and the doctor did not want to schedule any followups just kind of checking in... heck a mental health check even..oohhh wait or do you have a MD too? and just neuro do not need to see you... just all sounds weird...

we hope to hear from you soon, you take care and sorry for the condition, hugsss,sarah

Glad you are being smart on the money end, yes in case of nursing home stuff... hugs, sarah

Nice to hear from you Craig and happy you are still plugging away, one day at a time. I guess DW has to do the same thing.

I wish you both well and I hope you keep in closer touch.:hug:

Hi Craig! :) Good to see you!