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Isaac's Syndrome is so debilitating and rare
Unless I contact other sufferers I feel so alone as no one else can understand what I'm going through
Rick Thurbon
Sydney Australia
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Isaac's Syndrome
- By rickthurbon
- Posted March 21, 2008 at 1:55 am · 8 replies
- In How my disease has changed my life
- Shared with the public
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8 replies
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- By Banjaluka
- Posted March 21, 2008 at 2:38 pm
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I search this site for information for my brother-in-law who has suffered at least 8 years with what seems to me is Isaac's. However he has been seen by several neurologists who have not been able, or willing, to help him even identify what is wrong. He has ben given half a dozen different medications (anti-pyschotics, anti-seizure meds) but nothing has stopped the 24/7 spasms all over his body. Since he is rarely able to sleep more than a few hours his Drs. give him sleeping pills-he has lots of sleeping pills and we worry his depression will some day cause him to use them to end his life. Finally after waiting for months on end to see another neuro-specialist he is al least getting some acknowledgement that his condition is real, even if they don't know what it is. My brother-in-law often says life isn't worth living if he has to live with this disease.
- By rickthurbon
- Posted March 21, 2008 at 8:56 pm
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Hello
Banjaluka
Sounds like your brother in law is going through what most people go through before being diagnosed with Isaacs. Yes, I understand what he is suffering not only the pain and stiffness but the rejection of his symptoms
Lucky for me the professor treating me is a brilliant man and was onto it quickly after many rejections of my pain and stiffness
If you email me directly I can give you link to the Isaacs discussion group - there is a lot of information there.
rickthurbon@bigpond.com.
Best Regards to all
Rick Thurbon Sydney Australia
- By debinok
- Posted April 8, 2008 at 6:03 pm
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Hi Banjaluka,
You have to go to a research hospitol. With rare diseases the average physician/neurologist aren't familiar with isaacs. You may also want to have him checked for stiffman syndrome. I have both and was misdiagnosed for 9 years before I was properly diagnosed. There is a very distinct blood test for stiffman/stiffperson disease that along with an elimination of other diseases is how someone is ultimately diagnosed. One quick way to tell if Isaacs is a possibility is to have him make a fist and release several times (at least 10 or so) then watch his arm/hand to see if the muscles move on their own, kind of like worms under the skin. It doesn't work everytime and it may be active in another muscle group rather than the arm/hand area. If you can see it doing that it will really get a physicians attention. Hope this helps. Deb
- By debinok
- Posted April 8, 2008 at 6:06 pm
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Hi Rick,
Nice to talk to a fellow Isaacs' sufferer. This disease sucks as we say here in the U.S. What medications are you taking?
- By rickthurbon
- Posted April 11, 2008 at 5:05 am
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Gday from Australia Debinok
At the moment I am taking Gabapentin and Baclfen
Have had 6 Blood Plasma Exchanges with little relief from the pain and muscles spasms throughout my body next week I will have the 7th plasma exchange followed by an infussion a drug called Mab Thera
this is a trial thanks to the great work of the Professors treating me and the wondeful Prince of Wales Hosptial . Please feel free to contact me on my email rickthurbon@bigpond.com
Kind Regards Rick
God Bless Australia
- By handertoe
- Posted April 28, 2008 at 2:16 pm
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Hey all,
I found part of our old thread here so I'm posting a reply in hopes that will make the thread easier to find. I just stumbled across it. I hope this helps to refresh our conversations.
Zobi
- By skittles
- Posted May 9, 2008 at 1:28 pm
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I have lost my answer again. I usually lose it when I press preview. Anyway, ask your doc if you have Stiff Persons syndrome. It is rare and your doc may not have heard of it. An EMG usually shows it but not always. I am praying for you. I know how it feels to wait for so long to get a dignosis, I still don't have one for sure and it has been 33 years. Thanks everyone for your support in this site. You are all great! (:
- By lgcnurse2001
- Posted July 9, 2008 at 11:05 pm
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wow i just tried the fist thing have to type one handed but that is right on the money.....
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