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Hi lene, I still can't make up my mind about having a flu shot. I'm really nervous about getting it as I don't want to chance my Dystonia getting worse. I'm already using a walker because of my many falls earlier this year. My MRI was ok accorrdin...
Lene, What do you think about us with Dystonia allready having flu shots and H1N1? I'm scared to death thinking should I get the shots or not. The fact that I'm a Diabitic and should really get the shots. I just don't know if I can't talk anymore ...
Elaine, I couldn't begin to count how many doctors I saw oner the period of 20 years or more. I had one doctor tell me I had Wilson's Disease. I was ruled out not having WD but having Chorea and was giving ativan and artane with hardly any results...
What is TAI CHI? I HAVE CERVICAL DYSTONIA. DO YOU THINK IT WOULD HELP ME? WHY DO YOU GET IT. I HAVE HAVE ALL KINDS OF PHYSICAL THERAPY AND NOTHING WORKED. CAN'T AFFORD MASSAGE. SHEILLA
Profile Information
- In the online health communities I participate in, I'm:
- a Mom/Mr. Mom (I’m here for you)
Comment Wall (11 comments)
- At 9:27am on August 12, 2009,
Karen said… - Hi Sheilla (love your aka Toots),
It is not fair that you are being handed so much to deal with.
The Botox is working, right? That is a wonderful positive. I hope you get the right treatment you so deserve. Like lots of others say, stay positive although this can be very challenging too.
Take care and big hugs to you.
Karen
- At 12:43pm on August 10, 2009,
Karen said…
- Hi Sheilla,
So sorry to hear that dystonia is in so many parts of your body. Enough already! It's so good that you can communicate so well through this website. Beka has done a remarkable job!
Do you get Botox injections and are you on any meds? I'm immune to Botox and Myobloc and am anxiously waiting for the new neurotoxin to be used in this country. I take Clonazepam, but I'm afraid that doesn't help much anymore. I've probably been on it too long. I still don't take as much as I can because I'm fearful of becoming immune to that too. I'm in pain unless I'm sleeping. Thank God I can get at least 4 hours of straight sleep.
I also have RSD, but I've got that in good control.
Hope you are finally experiencing some good weather, because I know what you mean about rain. It makes me worse too as well as humidity.
Take care,
Karen
- At 5:53am on August 10, 2009,
kevin lajoie said… - hi toots(shiela),
im type 2 also. my blood sugar is under control. i take actos 30mg for the diabetes. i also have high blood pressure and high cholesterol. the hardest part about diabetes is the diet.
- At 3:02pm on August 7, 2009,
Karen said…
- Hi Toots,
I just received your e-mail.I was away for a few days. I'd love to be your friend. Do you have this dreaded disorder too?
Hope you're having great weather!
Karen
- At 5:22pm on August 6, 2009,
Lene said… - Hey toots, Nice Pic.................lets chat soon
- At 9:03am on August 6, 2009,
Quirina said…
- Hi!
Yes I hear you yelling!!!!!
Where about do you live if I may ask? I can ask my neurologist next month if he knows someone near you who you can trust. Since trust is a key word too!
I wouldn't want to change neurologists either but I do know if I had to move somewhere else and can't stay with my now neurologist I'll ask him for a good one.
About your insurance, somehow you have to find out (maybe easier said then done for me!) what to do (I know money, money!) but still worth trying to find out. That's one thing that really sucks (Pardon my French) in this country is health insurance (it's like the Middle Ages!) and I hope it all will change soon.
So keep on yelling at me, no problem at all!
Quirina
- At 9:39am on August 5, 2009,
- Morning Sheila,
Wow that's a lot which has been going on in your life! So sorry to read that.
But try to stay positive because stress for sure "we" don't need or have to try to get control over that.
Just make sure that you work together with your new neurologist, that's so important. And that he uses the EMG! It's like Art, to find the right muscles and takes time. It took me at least 2 years, when I got to the right neurologist, when we (the neurologist and I) found the right muscles. And.......it changes overtime too. Some muscles are totally calm now and hardly need any Botox, but others have taken over. Luckily not as bad as before.
I'm convinced if you try to stay positive that helps too. It's difficult I know but it's worth trying.
If you ever need help, a name for a neurologist or what ever.
And you know if you have to travel farther away but at least are with the right neurologist that's so important and will get your stress level down.
If you want to yell, I'm here and you can yell at me! I know and understand why one sometimes needs to do that!
Hugs,
Quirina
- At 8:49am on August 1, 2009,
- Hi Toots,
Nice to "meet" you! I'm new here too and am still figuring out how everything works. For instance I can't find your "life story" but understand you have been going through much worse then I did and understand you're doing ok.
I will write something about my "life story" with ST Dystonia though it might become a long story as most of us have here. lol
Through someone on facebook I got here.
I suffer from ST Dystonia in my neck, which started over night about 7 1/2 years ago. Looked like a stiff neck and though I had caught a cold or something like that.
Than I still lived in The Netherlands, I'm Dutch, and was misdiagnosed as so many are. My Dr. first send me to physio and manual therapy (wrong, wrong!) and finally to a neurologist. But the neurologist had no idea either. Both my Dr. and neurologist in The Netherlands said "it was between my ears" and would go away in due time, but I knew there was something sooooo wrong!
I took every pain medicine, even alcohol to make myself feel better.
When I came over to the USA my Dr. here send me right away to a neurologist who immediately saw what I had ST Dystonia. I had never heard of it so my research could start. By that time, in the meantime 1 1/2 years later after it started, I was in so much pain, and my neck turned to the left severely. The neuroligist himself didn't know what to do but send me to a sports Dr. who started giving me Botox. Again wrong, wrong person!!! Later on I found out the dosage Botox he gave me was even too small for a baby.
Everything became worse, couldn't eat/drink or walk myself anymore and ended up in a wheel chair with severe pain. Went to pain clinics and so on. Until I finally ended up in Jefferson Hospital in Philadelphia, in the mean time 2 1/2 years later. There a neurologist told me to go to only, nobody else, but Dr. Stephen Gollomp, neurologist in Lankenau hospital. He is one of the top neurologist (Parkinson's and Dystonia or any movement disorder) in the USA. He trains other neurologist here and all over the world how to use the Botox with the EMG (very important!).
I can tell you, for him I'm a miracle and he can still hit himself he didn't take a picture of me than and now! Of course it took a while before he (we, because you have to be a team since it is an Art in my eyes) targeted all the muscles which were pulling.
Now I'm on Botox every 4 months, only take half an Ultracet or Diazepam when I need it. I know I can do longer without the Botox but don't want to take the risk of a relapse. At 1 point I was on every 4 1/2 months but during winter time that's too long.
As I tell my neurologist every time when I go there, I give my self a 9 1/2. If I would give myself a 10 I'm cured, and wouldn't need the Botox anymore. In other words I function for 99% normal again and no pain.
2 Things can make it a little worse, that's stress and when it's cold.
It was a long way, as many of us had or still have to go but I'm totally back.
If I can help with names of good neurologists I can always find out through my neurologist.
A friend of mine is this month going to Daniel Tarsy MD, Beth Israel Deaconess Medical Center,in Boston MA. He also wrote THE Textbook on Deep Brain Surgery. My neurologist is a student from him.
Ok think this is more then enough about me. In short I'm doing great!
Hope you have a nice and sunny weekend!
Quirina
- At 5:35pm on June 21, 2008,
Lene said…
- Toots, Singing is the only thing I can do without aggrivation. It really soothes the soul and I forget my head is moving and my neck is twisting. People just love to hear and I notice or I don't think they are critizing me. The chorus & quartet has been my life-line for sure. They let me sit on a stool ...but I often force myself to sing on my feet. The singings seems to relax me. It's hard to explain. Now I am dealing with spine proplems..the neurologist could not seem to understand the pain I was in so she referred me to a pain specialist and he has done some good things. I can stand longer than I have for years. He is so sympathic and helpful. I have had some cervical blocks, and epidual shots, etc. along with the Botox every 90 days.
- At 5:27pm on June 21, 2008,
sisdailey said… - Hi Toots:
25 years is a long time without a diagnoses. I don't see how you endured it. Just goes to show how little medical doctors knew about dystonia. I thought I would go nuts and it only took me 2 years. I also had a bad experience, or I think it was. I was sent for physical therapy where they twisted my neck and pulled on it to stretch it. I think it made my dystonia worse for me now. Thank God you did not have Wilsons disease. Gee, you've really been through a lot. I am so glad to know you are now getting help with botox. It is not a cure but one of the best treatments they have for our condition at present unless you have the DBS surgery. That in its self is still not a cure. Just like botox it works great for some and for others it does not. So we have to keep a good attitude and keep on searching for help and spreading awareness of dystonia. I hope you are having a good day. It is nice to have you for a friend.
Sisdailey
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