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nightwolf_mk

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I tried to post this in my previous thread about my diagnosis but that thread is closed. I tried to change my profile but I cannot access my information anymore.
After some months of reevaluation my diagnosis was changed for a disease called Isaac's Syndrome. More information can be found here (I don't know if I can post this link but since it is from a government institute I hope I can):

Isaac's Syndrome Information Page: National Institute of Neurological Disorders and Stroke (NINDS)

The neuro told me this can mimic als symptoms. I would not post this here since I was banned and cannot access my profile anymore, but maybe this is another thing that can be ruled out for others in the diagnosis process.

Bye.
 

HelenL

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Hi nightwolf_mk, while it doesn't seem to be a picnic, I'm glad you have something... anything that's not ALS... what is your treatment going to be? Wishing you luck as you go forward.
 

Toto's Dorothy

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Wolf,

What tests led up to your final di ag no sis? May o mentioned the E M G; were your Po tas sium (K) le vels nor mal? Did you have a mu scle bi op sy?

I would like to thank you for letting us know. Good Luck and keep us informed of your pro gress.
 

nightwolf_mk

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Hi. I had a high auto-antibodies count in my blood plus the emg findings (fasciculations and others spontaneous activities). I started the treatment with carbamazepine but I had allergy so they changed to oxcarbamazepine. The tests findings and the fact that this medicine reduced my symptoms was the reason they gave me the final diagnld me to coosis. They to continue the echinacea since it can help to modulate the immune system.
This condition doesn't have a cure but it is possible to control the symptoms using antispasmodic drugs such as carbamazepine.
I hope they can find a way to do that with als soon.
 

oscar1

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I hope its something taht is treatable and you get a better qaulity of life

take care margarert
 

momap53

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Good luck to you! I'm glad you have an answer.
 

Rami

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There are some blood tests. They are not 100% diagnostic. One is for voltage gated pottasium channel antibodies (VGKC) another is called CASPR2 antibodies which I'm fairly sure is something all the lines of conactin like protien. The other one is LGI-1 and that is for leucine Rich glimoa inactive protien 1. Also thymoma's (thymus tumours) are somewhat common with this disorder. Mysthenia gravis also commonly occurs with it. The EMG should show constant fasiculations in groups at rest.
 

monster

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Thank you for updating your diagnosis, Hope you continue to stick around and post.
Good luck to you
 

Grateful

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Hi Nightwolf!

I'm very glad that it is not ALS, and that there is some treatment available which is helping you. Obviously Isaac's Syndrome is not something one would wish to have but it's better than the alternatives!
 

Wings

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thanks night wold i had no idea about Ech inacia moderating the im mune system - i will also try and find out why ox carbamazepine doesnt work with als... or has it been tried?
 

Bliz

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Hi Nightwolf (maybe you remember me - Blizna - from our conversations).

I am SO happy for you and of course, for me as as another person with fasciculations I did get scared when having read your post.
While I do not understand how they could confuse Isaacs with ALS, I am really happy..I cannot imagine the hell you went through...
 

nightwolf_mk

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Hello everyone. Thanks for the messages.
As for oxcarbamazepine unfortunately it is not effective in ALS.
Bliz, I think they changed the diagnosis because the first neurologist wasn't specialist in this kind of diseases and the second was. If you look in google for "isaac's syndrome als misdiagnosis" you will find some cases. I can't say I'm not happy but at the same time I feel sad about the other ones who didn't have this "lucky". Fortunately there are some promising trials under way and I hope they can find some treatment for ALS.
I would like to change my profile to not scary more twitchers but my profile is in moderation and I couldn't find a way to do that. Sorry to bother all of you with my history.
Hope to see you soon.
 

Tokahfang

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I appreciate your update, Nigtwolf. I've had you quoted by several worriers, and am favoriting this thread to send them to. Unfortunately we have just one single moderator now that Al has departed us, so getting your profile changed is pretty unlikely. But this threat will give those of use who try to help people with their health anxiety some ammo, and I thank you for it.
 
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