View Full Version : Neuromyotonia, Cramp Fasciculation, Benign Fasciculation syndrome, or Stiff Person


Hyperman87
09-29-11, 10:18 PM
Any one here have or been tested for these disorders. I'm going though it right it's really though I feel like I'm losing my mind doc don't know what's wrong and Neither do I. Had an EMG and EEG and they were clean. I'm on Valium sometimes it's hard to even walk or do simple things.:(

zannie
09-29-11, 11:32 PM
Hi hyper, sorry I don't even know what those disorder but if you can barely walk i am guessing that they involve pain and discomfort. I hope you get through the testing and you are able to find a solution. I'll be thinking of you.

zannie
09-29-11, 11:34 PM
I re-read your post and I realize that you have been tested and the doc doesn't know what is happening. Does the doc have any idea about where to go from here?

Hyperman87
09-30-11, 01:14 AM
Well MS and epilepsy had come up but the EEG was clean as well as the EMG and I guess there was no reason for an MRI but Yeah without enough Valium I'm stiff, I twitch and I'm usually in pain. It started earlier this year about a month before a restarted ADHD meds for like the first time in a decade.I've just been on Valium for a few months(Not Anxiety Related). I actually haven't gotten an official diagnosis about my muscular issues.:(

zannie
09-30-11, 01:16 AM
It started before you took the adhd meds.. How do they effect the problem if at all?

Hyperman87
09-30-11, 01:21 AM
Yep that's correct and they haven't made it any worse.I'm just not sure what going on but when I was put on Valium I was given a Neurological exam. The doc repeatedly ask If I had suffered any brain damage. I said not to my knowledge. :)But if it's one of the disorders I believe it could be my Immune System just might have caused some.:) It sometimes feels as if my body would like to stiffen up like a broad and stay that way ether that or I'm twitching like all the time.

C8H10N4O2
09-30-11, 02:40 AM
Any one here have or been tested for these disorders. I'm going though it right it's really though I feel like I'm losing my mind doc don't know what's wrong and Neither do I. Had an EMG and EEG and they were clean. I'm on Valium sometimes it's hard to even walk or do simple things.:(

I've actually been going through a lot of the same stuff lately. It's been pretty frustrating.

IhasAnExcuse
10-11-11, 01:44 AM
I've actually been going through a lot of the same stuff lately. It's been pretty frustrating.

Me too.

Extreme muscle stiffness, aches in my joints, & muscles spasms/twitching all over. Very tired all the time. Poor sleep habits. List goes on.

Blood work, neuro exam, all came up negative for MS or other muscle disease. I gave up trying to figure out what was wrong when the neuro doc dismissed me. I deal with the pain. No pain meds & Cymbalta isn't helping with those aches & pains like I had hoped.

I have a sneaking suspicion that it could be all related to Nociception. http://en.wikipedia.org/wiki/Nociceptor

For whatever reason our neurons overreact causing our brains to think there is an injury to that area & we feel increased pain.

Example, my knee hurts all the time. I took a fall breaking my wrist & while getting an MRI or CT scan on my hand the doctor agreed to have my knee scanned as well. He tells me I have the knee of an 18 yr old & everything looked really good. I was 30 at the time. I don't make this pain up to get pain pills or attention. I actually refuse 99% of the time to take pain pills for anything that is wrong with me. I have refused RX's from my doctor for pain pills. But in all reality maybe it is all in my head b/c my stupid neurons are sending my head messages. lol

Anyway, maybe this helps maybe it doesn't.

Lunacie
10-11-11, 08:32 AM
Any one here have or been tested for these disorders. I'm going though it right it's really though I feel like I'm losing my mind doc don't know what's wrong and Neither do I. Had an EMG and EEG and they were clean. I'm on Valium sometimes it's hard to even walk or do simple things.:(

Your symptoms sound similar to those of my son-in-law who has Parkinson's
Syndrome. How are those disorders different from Parkinson's?

TygerSan
10-11-11, 03:01 PM
Dopa responsive dystonia? Crazy and unlikely, but???

http://www.dystonia-foundation.org/pages/more_info___dopa_responsive_dystonia/64.php

Hyperman87
11-06-11, 10:55 AM
There all Neurological disorders or Illnesses accept those are usually benign(don't progress) but many people with Benign Fasciculation Syndrome, Neuromyotonia, or Stiff Person Syndrome have symptoms very much like Parkinson's, ALS or MS.BTW I had a CNS MRI it too was clean save for a sinus polyp.Still on Valium still having twitches and stiffness. The month of September was a really bad one . Some-days I could hardly walk.Never have received an official Diagnosis but I still have Neurological movement symptoms. Also I recently discovered and was told by my wonderful lady doc(I'm so smitten)LOL:). That I have Allergies(I'm now on Clartitin). I Belive my issue is an autoimmune Nervous System Disorder. BTW When I take Adderall the Symptoms sometimes improve so maybe it's a dopamine deficiency issue not unlike Parkinson-ism or Dopa responsive dystonia.

Lunacie
11-06-11, 11:03 AM
There all Neurological disorders or Illnesses accept those are usually benign(don't progress) but many people with Benign Fasciculation Syndrome, Neuromyotonia, or Stiff Person Syndrome have symptoms very much like Parkinson's, ALS or MS.BTW I had a CNS MRI it too was clean save for a sinus polyp.Still on Valium still having twitches and stiffness. The month of September was a really bad one . Some-days I could hardly walk.Never have received an official Diagnosis but I still have Neurological movement symptoms.

Thank you for sharing this information. I've been wondering what's going
on with me for a few years now. In some ways it looks like my son-in-law's
Parkinson's Disease, but when I read about that I can tell it doesn't fit.

I swear it take me longer to get up and start moving than it does him,
but maybe he hides it better, and he's also taking meds that help some.
During the spring and fall I worry about tornados in our area and whether
I could get up and get to our shelter quickly enough. Or if a fire broke out
in our house, I worry about being able to get up and get outside quickly.
No chance of getting a diagnosis because I don't have health insurance.

Hyperman87
11-18-11, 11:52 PM
Sometimes it's not what we think unfortunately when multiple tests come back negative it could be anxiety.:(

never2late
11-25-11, 01:33 AM
I have been having similar issues as well ( body stiffness, achey joints, fatigue, muscle weakness, muscles twitching). Still waiting rheumatologist test results. I had ANA 1:320 Normal Titre. Thyroid ok, electrolytes ok. I had a bad reaction with the Prednisone she gave me in the meantime. First 4 days were great with relief from joint pain and muscle tension at 5 days at 10 mg per day. Then the problems started. I had MAJOR mental instability, which I had never experienced before. Confusion, lower cognitive functioning, crying fits( like while watching TV), anxiety, and major depression were swings in my mood. I have stopped the prednisone and it seems to be getting better.

It is frustrating to deal with the lack of energy and fatigue. I feel like I am trapped in the body of a 60 year old. Im waiting for the results. So you guys went to a Neurologist? Im pretty fed up with dealing with this. If my test with the rheumatologist comes back with no hits, maybe Ill try the neurologist. Thanks for the post.

I wanted to add that if anyone is taking prednisone for stuff like this and you begin to feel like you are losing your mind- call your doctor and stop taking the prednisone. It had a HUGE effect on my mental state after it built up in my system. It did however relieve my physical pain and joint stiffness.

john(CFS)
01-06-12, 06:57 PM
Any one here have or been tested for these disorders. I'm going though it right it's really though I feel like I'm losing my mind doc don't know what's wrong and Neither do I. Had an EMG and EEG and they were clean. I'm on Valium sometimes it's hard to even walk or do simple things.:( I have lived with CFS sence 1974. I was finaly dignosed in 2005 at Emery University MDA clinic, in Atlanta, George. This desease was first discovered in 1964, and a simple EMG will never tell anything about CFS. The only way to diagnose CFS is with an EMG but they have to repeat over and over again for over an hour before anything shows up. At Emery University MDA clinic they developed a Pulse EMG. It starts with a mild voltage and each pulse gets stronger, each cycle is Eight pulses and then it waites about a minete and starts all over, until your system goes crazy. It only took three cycles, on the third cycle my system broge down. I had a plain EMG about 20 times from 1974 through 2005. you need to stay away from all heavy metles, pestasides, any herbaside. good luck john(CFS)

tudorose
01-12-12, 08:02 AM
For the last 6 months I've had Ross River Virus. It's a form of viral arthritis that gets into the joints, muscles and lymphatic system. I really want to be better. I rode my bike to work Monday and have been cramping ever since. Willpower won't overpower it. Got no strength and everytime I exert myself it burns. Sooooo sick of it. Hyperman does this sound like you. Have you been bitten by any mozzies?

oneup
01-18-12, 03:50 PM
I had a bunch of different tests--emg mri ssep. The thing about neurology is like 50% of the time they can't pin point the cause. From my experience they will try to rule out stuff like ALS and MS, but after that take a wait and see approach, which can be frustrating. In my case I got 3 different diagnosis from 3 different neuros over 2 years. I take a mineral supplement that helps a little bit but am reliant on muscle relaxants as well (baclofen).