Re: Remission
Yes I have heard of 6 people who have gone into remission in the 3 years I have had this disorder. 2 were near me and I talked with them both. 1 seemed to truly be in remission with very little signs or symptoms unless she gets extremely over tired or stressed and then she said her eyes feel tired and just not right. I am working with the person she worked with for a year in 1987-88 when she went into remission. I am trying to be patient but after 2 months no sign of improvement, but she said it took a year and it was very gradual and expensive. I can attest to the expensive and will be the first to let everyone know if I see improvement. The 2nd person said she was in remission but after talking to her it seems her symptoms are manageable enough to continue working as a nurse doing paperwork near her home. She can't drive very far. Her husband had recently died when I talked to her and her symptoms were a little worse after that. BOTOX had stopped working for her, but she didn't have progression to Meige. The 3rd person is Susan Hassel who use to post occasionally as the resident medical expert when I first started posting. She works and seems to do well. I'm sure there are others out there but unfortunately they don't post like we wish they would. There are a few others who I've talked to who say certain herbal therapy has helped them to the point they say they are in remission. But after talking to a few of them some still have some symptoms and have to control their environment externally and internally to function. One lady wrote to me that Ru-Tuss which has guafenisen opened her eyes. She works but can't work in buildings with carpet or fluorescent lightening. I tried Ru-Tuss, Super Blue Green Algae, and another expensive multimarket formula called Ambrotrose which 3 different people said put them in remission and they did not work for me. That doesn't mean they wouldn't work for others.
Re: Remission
Gee Delaine, Do you get most of this stuff at your local health food store and how do you know how much to take? And How Expensive approximately? How long did you use it? You can see that I am at the stage that I will try anything. Wish I could go to China to a terrific herbololgist. Ann Doyle
Re: China town?
Maybe you have a China Town in your area Ann - you could, perhaps, get a reference to an English-speaking herbologist there and see what they have to say. Just a thought and it saves the expensive of a trip to China!June in Toronto (beb/meige)
Re: Remission
That's a lot of questions that I really can't answer. I've tried a bazillion things from reading and hearing what other people have done. I've spent a small fortune and am now qualified as a human guinea pig. What I am doing now is with a woman from Denver, Co. But the jury is still out and I really wouldn't want to talk about it until I see results. I have spent almost $400 a month for 2 months on different herbs from 3 sources she recommends. I don't won't to post my email but my email and phone # is in the newsletter under Middle TN Support group contact person if you want to contact me for more info you can. The first month I had some really good days, but this second round I've had some of the worst days I've had. I've also been helping my daughter get moved and keeping my granddaughter which could be the reason I'm not doing as well. Also I've had one sinus infection after another for a month. So with this stuff you never know. I wouldn't recommend this person until I have some real remission or improvement.
Re: Remission
How long do you have to be symptom free to know if you are in remission?
Mindy
Re: Remission
Wow if I went a month with no symptoms I could say I was in remission for a month. Of course the longer the better and off of medications previously taking(traditional treatments). Remission is just a period of time without signs or symptoms of the condition or disease.
Re: Remission
"Remission is just a period of time without signs or symptoms of the condition or disease."
Thanks, Delaine. Then I can say I'm in remission for 5 1/2 months.
Mindy
Re: Remission
No, I really meant China since they are so far advanced there in using herb and acupuncture. I can't affordd $400 a month unless it was a sure thing. I have a husband with a mind set about spending money. His family had a tough time during the depression of 1920 and its part of his core being.
Also , I need to take some heart meds and I check all unprrescribed meds, drugs or herbs with him first. I had a bad reaction with kinko biloba. That's when I started checking with him.
I am definately interested in what you are doing Delaine. Please keep posting if you find something that works. Ann Doyle
Re: Remission
Great Mindy. Can you share with us what you are doing and taking?
Re: Remission
I'm so happy for you, Mindy. I'm under a great deal of stress right now.
--modified by kathy at Sat, Feb 23, 2002, 09:09:52
Re: Remission
Do I understand that remission also means the withdrawal of meds that
we have been taking for it? Joanne M. San Diego, CA
Re: Remission
If you are symptom free on Botox or medication, that is not remission, just the medication working. If the signs and symptoms cease and you are no longer being treated, you are in remission for that period of time.
Re: Remission
Thanks for the response, Delaine. Kind of what I figured and it makes
sense. Joanne M. San Diego, CA
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