part 3 Please help us. Isaacs Syndrome? CIDP?

[cidpusa700]

a must read for all of you is CIDPUSA dot Org Get all the answers alternative treatments do not suffer

[iamcharliegirl]

I have CIDP, my symptoms are pain in my hands and feet, I used to trip and fall alot, I have bad balance, headaches and was diagnosed but a muscle biopsy done on my leg. IVIG helps me alot, I am week but am capable of living a mostly normal life, How is she doing now? My prayers go out to you.

[bunnybubblesxox]

i have a disorder simular to issacs i find that power lifting before the cramping starts has helped me greatly i also wear support stockings and stretchy back brace to keep my nerves stimulating and firing correctly if you would like to email me my email is rwarner27@stny.rr.com

[ramblnrose]

Optical Neuritis is usually one of the first signs of MS. She also needs a MRI done on her brain. She will probably show many areas with Scar Tissue ( Plaque ).

[jscudiero]

Stiff Man Syndrome is made even more likely by the fact that it is usually preceded by other autoimmune diseases. If they're 100% sure it's not a seizure, I vote with those who say SMS.

[audreylovesjesus1964]

@jscudiero This is not SMS. It is CIDP in it's severest form. The muscle spasms are seizures. I have the same exact diseaase. It is hell to go thru. I am praying for you honey. I know what it is like.Nobody knew what was wrong. Doctors kept pushing me from one doc to another. The CIDP left untreated for too long causes lesions on the brain which looks like MS but isn't. I was untreated for 10 yrs. I am now on IVIG treatments at home & making progress. Contact me via email weeble1964us@yahoo.com

[atvchick09]

I agree with others seams like stiff persons syndrome! Did you find out what was wrong?

[wschraml18]

This seems like Stiff Person Syndrome. I would definitely recommend not stimulating the nervous system by touching her so much during episodes as this could make the spasms worse.

[mica24423]

It definitely is not Isaac's Syndrome, it seems like Stiff Person Syndrome to me as well.

[666jacobprice]

hope she is doing better. best wishes. 

[TheTanyamare]

She has Stiff Person Sydrome, ask for a GAD test and know she is not alone, God Bless her! Valium and Baclfofin, I have had it for 8 years.  Research Stiff Man Syndrome,

Tanya

[cidpusa700]

cidp can make you pass out and cause severe pain, please check cidpusa web site and get help . CIDP is of 101 types . These are painful spasms

[taylorskarning15]

Well judging by the info she doesnt have C.I.D.P. I know because I have it and Ive never heard of a case who has passed out from it or even felt pain.

[dylanstar45]

Does it hurt?

[vivianmendoza100]

Iam in awe, only thing I can say to every person suffering from these conditions is G O D B L E S S all of you. I will think of all your suffering every time I am a little depress for some stupid thing. You guys are my heroes!

[TheWiseMagpie1]

P.S...

My calcium is also very very much too low, and you need vit. D3 to regain normal bloodvalues.

I SO want to help you!!

KEEP THOSE DOCTORS WORKING FOR HER!!! DONT AGREE WITH LESS ATTENTION!!!!!

[TheWiseMagpie1]

I reacted on another of your videos. I also have fibromyalgia and an beningn fasciculation syndrome.

DO NOT LET THE DOCTORS USE THAT "DIAGNOSIS" TO EXPLAIN YOUR WIVES CONDITION!!

DID THEY ALSO CHECK HER VITAMINE D3 LEVELS??? (CHOLECALCIFEROL)??

[Doggterrorist]

is she ok now ??

[MWARIO191]

Cidp is a chronic form of GBS by the way**

[MWARIO191]

I'm not a doctor, but when I had cidp i did have sever headaches but I did not have muscle spasms. I was not able to put my arms all the way up as she is doing in this video. I was also not able to bend my leg back like how she was doing in this video. But keep searching you'll fin help somewhere.

[twinkers760]

hi please tell us they found a cure or at least the name of this illness. my prayers are you. please keep us informed my daughyer is a teen and is on abilify and i am concered if this may be a side effect. thanj u

[smith092]

Isaacs is thought to be caused by antibodies to the potassium channels in motor nerves, which connect to the muscles. As such, I believe that the symptoms of Isaacs are relatively less severe and more constant than the cycle you describe.

Please note, I am not a doctor, but I would surmise that, because of the loss of consciousness, the trouble is either in the brain or something that affects the brain.

[smith092]

Does she twitch/spasm when asleep, or does she stop doing so? Several neurological diseases that cause muscle symptoms when a sufferer is awake, do not cause symptoms when they are asleep. My memory is off, but I want to say there are about seven of these, including MS and dystonia.

The twitching of Isaacs syndrome continues while the sufferer is asleep.

[mcopilot]

continued from my previous post: CIDP is the chronic form of Guillan Barre Syndrome and is very debilitating. What ever you do do not give up, do as much research online as possible and if nescessary educate your doctors on this condition. I pray for you and hope you receive some releif. I take gabapentin and other pain medicine, but it barely controls the symptoms. DO NOT GIVE UP and stay strong.

[mcopilot]

I feel for you I really do. Let me explain my situation and maybe you can understand. I am not a Doctor only experienced in this situation. i had Guillan Barre Syndrome in 2000. Since then I have developed the residuals of Guilan Barre Syndrome this includes numbness, burning and tingling in the hands and feet. It always feels like my body and my spine are bruised. I have fainted due to the extreme pain from this illness. Most medical practitioners do not understand this condition.