Hi Sheilla,
With having a disorder that lets us know all of our waking hours how much pain we are in, it is understandable that we do not keep in touch with most people. I know that I have become isolated due to dystonia. I know what you mean about finances. My husband had a very successful business for over 20 years, and now he has been unemployed for over a year. I work very part time as a substitute teacher. It does get me out of the house, but I'm exhausted and in a lot of pain by the end of the school day.
I'm so sorry about how your daughter has upset you but it is out of your hands. Like you said, you pray for her all of the time and do the best you can for her. Just remember that you have 2 sons and a granddaughter that you are extremely proud of.
This Thanksgiving was at my home, but my son cooked the main meal and my daughter brought the appetizers and desserts. This is a first and it was wonderful to get all of this help. Another first is that my daughter and her husband will be having Christmas dinner at their home. So, another dinner I don't have to deal with. I will make an appetizer and bring a dessert. I can't afford to spend like I have in previous years, but I think everybody understands.
I hope you enjoyed your Thanksgiving and I do wish you a Merry Christmas!
I hope that we will hear some positive news for all of us who suffer with dystoina in the new year.
Take care and keep in touch,
Karen
First off, very cool, creative username.
I'm sorry to hear you're going through such a rough time with this medical issue.
I don't know much about it. But I do know a lot about Siamese cats!
They're SO smart! Am I right or what? You will have to reply back and tell me about your Siamese's personality.
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
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
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.
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
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
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
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
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With having a disorder that lets us know all of our waking hours how much pain we are in, it is understandable that we do not keep in touch with most people. I know that I have become isolated due to dystonia. I know what you mean about finances. My husband had a very successful business for over 20 years, and now he has been unemployed for over a year. I work very part time as a substitute teacher. It does get me out of the house, but I'm exhausted and in a lot of pain by the end of the school day.
I'm so sorry about how your daughter has upset you but it is out of your hands. Like you said, you pray for her all of the time and do the best you can for her. Just remember that you have 2 sons and a granddaughter that you are extremely proud of.
This Thanksgiving was at my home, but my son cooked the main meal and my daughter brought the appetizers and desserts. This is a first and it was wonderful to get all of this help. Another first is that my daughter and her husband will be having Christmas dinner at their home. So, another dinner I don't have to deal with. I will make an appetizer and bring a dessert. I can't afford to spend like I have in previous years, but I think everybody understands.
I hope you enjoyed your Thanksgiving and I do wish you a Merry Christmas!
I hope that we will hear some positive news for all of us who suffer with dystoina in the new year.
Take care and keep in touch,
Karen
First off, very cool, creative username.
I'm sorry to hear you're going through such a rough time with this medical issue.
I don't know much about it. But I do know a lot about Siamese cats!
They're SO smart! Am I right or what? You will have to reply back and tell me about your Siamese's personality.
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
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
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.
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
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
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
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
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