Branthony, i bet Cedars does have a good neuro department. Thanks
branthony said:
I ended up at the neuromuscular dept. at the university of colorado. Also Mayo clinic neurology in Arizona would be something to look at. I'm surprised Cedar Sinai wouldn't have a good neuro dept., maybe check into them as well.
Jaimi , you aren't on this site so you might not see this, but i want to thank you very much for the blood test info. That is what i need, i asked my doctor to check B12 so he wrote it on the sheet but i haven't gone in yet, and he tested the usual stuff, but i think heavy metal is good to rule out. (i ruled out HIV a long time ago, been tested 2X just to make sure, and have been pretty celibate since then. My ex husband/daughter's father died of AIDS. I would like to get Vitamine E, see how that is doing, lots of stuff on your list, thank you so much. Tonight i cut down my Valium from 8mg to 7, and in 4 days, it will be 6mg, my doctor said he didn't want me to go any faster, he is worried about the neurological effects of stopping too fast. And i am too. But i feel so sure that the medications play a role in my blood sugar being low, i've been taking sleep medications pretty much for 40 years. not good, not good for the brain in particular. I'm going off this one and i'm done, live and learn, hopefully. i mean, hopefully live, definitely learn. thank you again, i appreciate this info
twirlie girl said:
Hi Judy,
Many possibilities;
I would keep looking up information but some sights are better than others.
Here are some other test to get done;
* B12 blood test
* HIV
*
At home you can check;
* toe heal walk, like the police do when they check if someone has been drinking. (I can no longer do that)
Doctor's
* check for sleep apnea, get a sleep study done
* have them check for a possible stroke
* MRI; brain & spine
More bloodd test;
* Vitamin E
* White Blood Cell Defferential
* Complete Blood Count w Differential
* Tissue Transglutaminase IGA, IGG
* Gliadin Antibody
* ALT (Alanine aminotransferase), serum
* Erythrocyte Sedimentation Rate
* Heavy Metal Screen, Blood
* Testosterone, Total
* Prolactin
* DHEA-S
* Transferrin
* Iron, Serum
* Folic Acid, Red Blood Cell
* Vitamin A
These are some of the test they gave me to rule out everything all my test came back normal or borderline.
* I was then tested for muscle and neurve responses from the Neurologist.
** my symptoms started w falling backwards and sideways, dizzy, nausea
** I was also dealing with a neck and shoulder injury.
Ataxia is very difficult to diagnose, and not a lot of doctor's understand it.
Read as much as you can, study and learn.
*Yes I would not take any sleep aids ween your self off asap
* no drugs or alcohol
* try to eat a healthy diet
* belong to more than one suport group
* write down all your symptoms and when they started
* Very likely you have more than one thing going on.
** I do not understand why they ran all the different blood test, just copied it off my chart, so yours could be different.
Good luck Jaime
* I am not on this sight very often, it was just by chance I saw this.
Jerry--
I will look into MS. i only know the typical symptoms but i'm sure there's much more. I'm sorry you are having such a worsening progression. I hope your continuing search leads to things that can slow it down and stabilize it. yes, you're right about benzodiazapines. And even more, the Z drugs like Ambien, doctors think they are mild. They are milder than benzos. but my addiction doctor switched me off of Ambien and onto Valium (benzo) because the withdrawals are smoother,, due to it being long acting. i guess this makes sense neurologically, maybe, but I've had two of these episodes while on the Valium while they had stopped 2 1/2 months before, when i went off the other sleeping pill, Lunesta, which is more like a benzo. Just the Ambien, even at a somewhat high dose, wasn't seeming to cause it. Maybe. i need more medical help in finding out what's going on. thanks for the info, just because they get a result doesn't mean you can draw certain conclusions from them, even if they do.
gelu65 said:
when you found lesions on your MRI I at first thought of MS.My MRI had no lesions so I was told it is not MS. Yor description sounds like it to me. But all I know is what I look up trying to find info on my problems. My probems just keep getting worse a little each day. No going away and coming back at a later date like some MS. I have stopped takeing any doctors advice as gospel after a 2 yr wait on cancer diagnosis.I also stopped takeingmeds that are very bad trying to get off of.Some docs will take you off a drug and cause you to go into seizures, some you just need a lot of time to taper off of them some may take considerable time to taper off, like benzodiazapams. Docs think these are better because they are not opiates,which I think the medical establishment is trying to discourage the prescribing of. Jerry
B Andrews said:
Hi Judy.
Thank you for responding. The bumped head was just a thought I had, based on my own experience. One time, when I passed out in a store, I hit my head on the concrete floor. I was so out of it, that I did not feel my head at all during exam, and the EMT did not find the BIG LUMP I found the next morning. Honestly, I think everybody thought I was just a drunk; the woman behind me in line said so out loud! (With zero compassion. ) Well, the concussion affected me for a couple of weeks, at least.
SO, glad you are landing on carpet. Now, what about railing for your bed? I have heard other Ataxians mention it. A little protection for you, anyway. B.
Judy said:
you were right!!! when i went to bed last night, i felt this sore spot on the rear side of my head. Later, i realized it went all the way around the back, not sure how it could be curved like that. But i must've hit my head, on what i'm not sure, furniture/lamps stuff was not disturbed. i don't think i have concussion symptoms but i'm seeing a doctor today, i'll check with him. thanks, the posts here in reply to my post have been so helpful and i've learned new stuff from them. Like now i know what i had the last two mornings was what we call 'coma.'' That's why i couldn't remember how i got on the floor and i woke up so disoriented. And i couldn't get up, my body wouldn't do anything like that. But gradually, later, it all improved. Anyway, i know my very low chronic low blood sugar has something to do with this.