part 3 Please help us. Isaacs Syndrome? CIDP?

She develops severe headache first, then severe pain and muscle spasms that becomes so bad that she can not bend her toes, legs, arm or neck. When is happens she has no nerve reactions in arms, legs, feet or hands. She then goes unconscious from the pain. 10min to 45mins.

When she comes back to consciousness her whole body hurts and then she gets her eye sight back and can move for a few hours and before this happens again. Sometimes slow with legs starting first or just getting a headache and passing out.

Headache always come first. Some face numbness.

My wife is 36 and has had Rheumatoid Arthritis & Fibromyalgia for 10 years now. This started last year in April and she was hospitalized for 7 days in one hospital and transfer to another with no answers. She was depressed during this and they put her on Abilify. This helped the depression and she has taken it for a year now.

Now she was hospitalized for another 7 days and they still don't know what is causing this. None of her current meds have changed to cause this.

All the tests she has had came back negative.
Sugar level is good during attacks.
Low CALCIUM & POTASSIUM
EEG came back ok, she had a muscle spasm during it.

They did 2 spinal taps in April last year in 2 different hospitals and no suggestion of MS or Lupus

Ideas we have??
Maybe a Fibromyalgia side effects

I also think its an Autoimmune disorder; Maybe
* Polymyalgia Rheumatica (large muscle groups)
* Guillain-Barre syndrome (nervous system)

Isaacs Syndrome -Neuromyotonia - Cramp Faciculation Syndrome - Peripheral Nerve Diseases

Chronic inflammatory demyelinating polyneuropathy

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Tags:

• muscle
• spasm
• Cramp
• Dystonia
• Dr
• help
• Fibromyalgia
• Isaacs
• Syndrome
• Chronic
• inflammatory
• demyelinating
• polyneuropathy
• Autoimmune
• disorder

[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 ).

[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

[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.

[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