Isaac's Syndrome Disease Issacs neuromyotonia (pain, ankle, arms, biopsy)

[rural lady]

Is anyone familar with this disease? Does anyone have it?

Thanks

[rural lady]

This is link, thanks to Suzy, anyone out there have this disease?

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

[issacgal]

More info
[URL]http://en.wikipedia.org/wiki/Neuromyotonia]Neuromyotonia[/URL] - Wikipedia, the free encyclopedia

[rural lady]

Paraneoplastic Isaacs' Syndrome: A Case Series and Review o... : Journal of Clinical Neuromuscular Disease

[rural lady]

I have recently been diagnosed with Isaac's its an autoimmune disease, I'm hoping some other's out there can join into this topic.
It's a rare autoimmune disease, I have searched the web and there is no cure for it.

Symptoms are:

Squeezing stabbing burning pain in lower legs that will make you drop.

Muscle's in ankles feel as if they are stiff radiating to upper legs causing severe pain

Shimmers of movement in arms without visibly seeing it

Shimmers on side of neck with out visibly seeing it

Rapid movement in arms, legs as if you were running with no movement on the outside of body.

It can affect the esophagus and other area's also.

There are more symptoms of this disease with uncontrolled muscle movements, neck pain & other symptoms

Some people have this along with other auto immune diseases, the medical terminology is hard to follow

Potassium-channel autoimmunity linked to chronic pain a few sentences from article


A substantial proportion of patients with voltage-gated potassium channel (VGKC)-complex autoimmunity experience chronic idiopathic pain, although the specific antigenic complex associated with pain remains to be determined, conclude US scientists.

Another link that some patients may understand, I find it confusing

http://pn.bmj.com/content/2/4/225.full.pdf

Sadly the only med's for this are Gabapentin/Neurontin for neuropathic pain and anti-convulsants such as Dilantin/Phenytoin, Tegetrol/Carbamazepine

I have scoured the web, there are medical neuro information sites as well as general medical info site's with numerous ad's and boxes that fly across the pages that get on your nerves.

I feel people with this disease just give up and take the med's, I can understand that being there is no cure.

I have wrote to several doctors who wrote articles on Isaac's hoping to get a reply, if people with this disease do nothing and the word is not spread, we are stuck with our pain and med's that help the pain but make us drowsy.

It took over 8 months for me to finally get a diagnosis, I was in severe pain, very high BP, I was put thru test's that I felt were unnessary, when a biopsy should have been done months ago.

ER doctors and personnel have no knowledge of this disease, if you ask any doctor most have never heard of it, ER will usually discharge you after a few hours being when you are lying down the symptoms go away and your BP goes down, unless your legs are blue you will not be admitted, blue legs is another disease with circulation.

[Mikala43]

If nuerontin works then Lyrica should too - they are very similar. Sometimes nuerontin takes such high does to work that the side effects (fatigue, mental fog, etc.) are too much to function - lyrica works similarly but you can take a lower dose to achieve the same effect in pain reduction.

[rural lady]

Originally Posted by Mikala43

If nuerontin works then Lyrica should too - they are very similar. Sometimes nuerontin takes such high does to work that the side effects (fatigue, mental fog, etc.) are too much to function - lyrica works similarly but you can take a lower dose to achieve the same effect in pain reduction.

Thanks for posting, I'm trying Dilantin but oh you feel numbness, it does not seem to be working together with other meds.

I'm weaning off of one drug to take another and it's horrible, I was having withdrawal symptoms bad and the drugs are not narcotic's!

One hell of ride, bad trip

[PippySkiddles]

sounds like a horrible disease to be going through. So sorry.
Lyrica is MUCH more expensive than Gabapentin. Is the Gabapentin not working?

[rural lady]

Originally Posted by PippySkiddles

sounds like a horrible disease to be going through. So sorry.
Lyrica is MUCH more expensive than Gabapentin. Is the Gabapentin not working?

Thanks for reply

The Gabapentin help's somewhat with the pain if you are not walking much.

Just doing home chores such as making the bed or standing too long on your feet causes you to sit down constantly.

You really cannot do all of your grocery shopping as you used to because of walking all over the store

With the Gabapentin you need to take about 5-6 300mg a day and that's just for being at home.

If I need to do my grocery shopping now I need to take the Gabapentin plus a pain pill

One of worse parts besides getting the pain is when you are sitting in the same position for too long it feels like a bunch of worms are crawling inside your legs, this is from muscles backfiring, this is only relieved by a pain pill. (The ER doc's months ago kept suggesting it was restless legs, I could have smacked them, I know what restless legs are, I had that a year ago from a med they gave me for something else)

The worst part is the thought that the Dr. will discontinue the use of the pain pills because they do not like to prescribe them.

I haven't had a problem with that so far from finally being diagnosed, pain causes your BP to rise so hopefully they have taken that into consideration.

I think the Lyrica differs from Gabapentin, there's a new time released Gabapentin called Gralise that's expensive also, even with using insurance.

I wish there were some kind of cure, there are no clinical trials being done, why that is I'll never know

[SouthernBelleInUtah]

Why aren't you using the mechanized carts in groceries, Home Depot, etc? I use them all the time.