Isaacs Syndrome Neuromyotonia Twitching muslces cramps CFS BFS

[bunnybubblesxox]

hi i have a form of issacs i find that power lifting has helped the pain and calms the nerves  it should be heavy weights

[willderkacz]

they twitch just like u

[willderkacz]

when i hit my shoulders and thighs they just like u

[Allibaby78]

Symptoms, which include progressive muscle stiffness, continuously contracting or twitching muscles, cramping, increased sweating, and delayed muscle relaxation, occur even during sleep or when individuals are under general anesthesia

[Allibaby78]

Isaac's syndrome (also known as neuromyotonia, Isaac-Mertens syndrome, continuous muscle fiber activity syndrome, and quantal squander syndrome) is a rare neuromuscular disorder caused by hyperexcitability and continuous firing of the peripheral nerve axons that activate muscle fibers.

[Allibaby78]

saac's syndrome (also known as neuromyotonia, Isaac-Mertens syndrome, continuous muscle fiber activity syndrome, and quantal squander syndrome) is a rare neuromuscular disorder caused by hyperexcitability and continuous firing of the peripheral nerve axons that activate muscle fibers.

[mica24423]

According to the Center For Rare Diseases Neuromyotonia affects 200,000 people in the United States to some degree. And seeing as there are 311,263,564 in the United States as of April 1, 2010 it is a rare disorder. I recently had an EMG done and the doctor who did it told me I most likely had Neuromyotonia because when they used the needle they tell you to relax your muscle and make all the sounds go away and mine would never go away. He said it was benign and was not life threatening.

[mica24423]

Also do muscle relaxers help your twitches or spasms? They have tried me on Tenex and Flexeril, the Tenex made the twitches worse and Flexeril did not help at all. What medicines have worked best for you?

[quasarhi]

@mica24423 Calling Isaacs Benign is not correct imo...it is strongly associated with having cancer and or Autoimmunity...progression as with many Autoimmune Disease is common and requires ongoing medication.

imo ask for claification or seek a second opionion...there is a LOT of information including hard data to be found at the Isaacs forum be great to see you there.

[mica24423]

@quasarhi My Neurologist is trying to find a good medication that will work. He seems to have a pretty good idea of what Isaac's is. He is trying Topemax to see if that will work. But I do have to say you are right it can be closely related to cancer (lucky cancers have been ruled out for me so mine is likely not life threatening) I was telling my mom today that someone should go on "Mystery Diagnosis" about it, to get the word out to those who have never heard of it.

[quasarhi]

@mica24423 I agree we need to get the word out anyway we can....good luck with the Topemax

[quasarhi]

@mica24423 Just a thought..I reread my last comment and it sounded a bit scary....just wanted to clarify that cancer is not seen in the majority of cases.

Hope to see you at the forum !

[smith092]

I have severe psoriasis (about 70% rash) and I think I also have Isaacs.

Do you have trouble lifting your leg, when standing, if you don't bend your knee or use your hands to help lift it? I mean by slowing kicking it up straight or forward.

When my heel is about a foot off the ground it starts to get painful, about another 2 inches more and I physically can't lift it further, under its own power.

[quasarhi]

@smith092 Hi

I dont have that trouble..I have also undifferentiated spondyloarthropathy (undefined Arthritis)..which can also cause heel pain..psoriasis is aslo an Autoimmune condition as......imo its best to see a Rheummy first..let them evaluate to include/exclude for other Athrititis.

Unless you have any continuous twitching there is less likelihood of Isaacs..if you do have the twitching then find a good Neuro who knows about Isaacs so he can include/exclude and find the cause.

My best

[smith092]

@quasarhi Thanks for the reply. I should have been clearer. Meant my calf starts to hurts, rather than my heel.

Did have rather sharp and widespread joint pain at one time. Saw a few different doctors including two rheummys, but was negative for all the tests. Later on when the pain subsided a great deal, I noticed the twitching. Had a twitch near my eyelid before any pain. Often I get a popping noise from my sternum. My theory is that all my joint complaints are caused by the muscles.

[quasarhi]

@smith092 Its hard to say....One thing..did they check for HLAB27+ ? if positive it means tests like RF remain negative....(for some reason this occurs with people who are HLAB27+.

One other experience I can pass on..yet wish it werent true..is that tests can anddo remain negative for years before going positive..this has happened to me after 4 years being neg.

However many people sit without disease progression or expansion..my mother being one of those.

imo if symptoms ramp up seek prof advice

[cidpusa700]

if you have fasiculations you can stop ALS please read more at cidpusa org

[cidpusa700]

the drug is available in Pakistan , cidpusa

[oscarwildeone]

You may be interested in:

Source: Meyniel C, Ollivier Y, Hamidou M, Péréon Y, Derkinderen P.

Dramatic improvement of refractory Isaacs' syndrome after treatment

with dronabinol. Clin Neurol Neurosurg. 2010 Dec 6.

Pretty amazing results with a readily available drug.

[quasarhi]

@oscarwildeone thanks for posting that info.!

I was already onto it...unfortunately Dronabinol is not available in Australia..nor is any derivative.

It certainly is promising.

Thx again

[happytimedanny1]

Question---does a negative EMG negate the possibility of Isaac's?

Keep us posted.

[quasarhi]

@happytimedanny1 Hi

The problem is that some Neuro's do not know about Isaacs and the specific EMG that needs to be performed to rule it in or out.

[HylianFury]

@quasarhi

is this disease fatal ?

or i got fasciculations and i'm scared.

my fasciculations are rare wel not rare i get them like every 20 to 30 minutes i wouldnt say if its a twich anymore i use to have twitches but somethimes its more like involluntairly movement.

I went to a neurogolist but he did not give me the answers i wanted to know he said i canot Find any ALS or any weird things but i didnt have any fasciculations in those muscles he testes he did the leg, and arms.

i am 23 atm

[quasarhi]

@HylianFury Friend, its up to you...if you worry still ..seek another opinion/ Neurologist who has knowledge in Neuromuscular issues...look/investigate/ring around for someone with this knowledge.

There is no way I can say what you have...best to seek the best professionals

Also TIP if you do go: make a video of you movements...and take it with you (put it on your notebook)

and show the Neuro.

My best

[HylianFury]

@quasarhi

I'm gonna do that thanks

btw i noticed from my blood exam that i have the fasciculations now 1 and a half years. :) i dont mind them just afraid of ALS wich it was isaacs lol :D or something just not ALS ^^

[theresamathes]

Hey-

I have the same EXACT symptoms and got them in the same EXACT ORDER! I have found some things to soften the flayling if you are interested. You can reach me through my YouTube video at Egoscue Austin Back Pain. I look forward to chatting.-Theresa.

[DIAGNOSISUNAVAILABLE]

I enjoyed your video. Please keep us updated and let us know how the thymoma and lung cancer tests turn out. You are certainly not alone!  I have experienced similar symptoms, and I can also trigger twitches by pressing on my muscles (or by stretching them). Was the anti-VGKC test negative for you? It was for me, but I still have all of the symptoms! I have posted a video of what I have experienced, so please let me know if it looks similar to the symptoms you have had.

[Billydude9]

Sorry to hear of the new development Ron. I do have to say you look healthier this year.

[quasarhi]

No worries Steve, it seems when it rains it can rain a bit more !

Hope you are doing better with the Flu.

[KelleeRose1]

Please keep us updated on how ya doing hun. Right now after developing hashimoto's disease, they now have told me of my second auto immune disease, rheumatoid arthritis (sp) seems like when you get one, it's not unlikely you will develop others, it sucks! Hugs to you.

[quasarhi]

Hi Kellee

Thanks for your reply.

Yes it is not uncommon at all to get more than one Auotimmune condition once the Autoimmunity process starts...many people dont even realise its Autoimmunity that is the real cause of their illnesses.

Wishing remission your way.!

My best