Definitions change...?
 

I checked out the references you've cited and found very little later than '92-'93? It could be that testing has changed, [most likely] a great deal since then and the 'definition' or diagnosis could have a different name, more specific now. I'm finding that the definitions are changing by the month, myself.

Are you at a point where you could see a new neuro with a newer set/fresher set of eyes and brains on your case? The second opinion route mite be a good way to get a new set of tests, to compare with your initial tests...
If you can get copies of your prior tests, using www.Lizajane.org and the spreadsheets there could be useful to help you 'map' out what has been tested, changed, and is, essentially going on with YOU. I hope this helps...- j

response to dahlek
 

The key word is "Fasciculation". That should yeild lots of citations. But, only Hudson et al 1978 (J. Neurology) have written specifically about the syndrome. I have seen 5 neurologists, 2 in the last year, and found them all to be of little use. Over the past 17 years, I have researched the topic extensively and concluded that the syndrome is idiopathic and shall stay that way. As described by Hudson et al, NCSs will be normal and EMGs will register the fasciculations which can be seen anyway. One neurolgists did selected blood test but they showed nothing. There are really no other tests, it's all based on signs and symptoms. Again, that is why I seek other MPFS patients. I am now seeing pain managment specialists only.

reply to rafi
 

If you search on Hudson et al (1978) "Muscular Pain Fasiculation Syndrome", J. Neurology, that should get you THE hit. "Fasciculation" should also yield lots of hits but they will be of little use. The 5 neurologists that I have seen are clueless. EMGs show the fasiculations that we can see anyway and the NCSs are normal, as the article says they will be. I will se if I can get in touch with the 2 posts you refer to. Thanks. SMc

Does anyone have the PN, MPFS? "Post"
 

I looked at the post. It was from Safety Officer at my government agency writing about me and asking a question about me. Yet, no reply or I just can't find it.

Oddly enough, though I've been Dx with PN of unknown cause, I've noticed over the past couple of weeks or so that I'm now having pain in my feet and lower legs (calves area). A deep, achy pain that doesn't seem much helped even by prescription strength (800mg) Ibuprofen. I'll have to see what I can find about this. This pain becomes worse if I'm on my feet for any length of time. If I rest my feet and legs, that is; stay off my feet, that pain eases but the PN pain worsens. Damned if I do and damned if I don't.

ETA: This makes me wonder if what I thought was RLS really isn't? The symptoms I experience are an involuntary sort or twitching in my feet and legs. Movement seems to relief this. I'm having a difficult time describing what it feels like... A need to clench the muscles involved. Not necessarily moving my feet or legs. What was the first symptom(s) you noticed? I'm trying to remember in what order my symptoms have come on.. Started with what I didn't know was probably RLS and an inability to lay on my hips cause my feet would go painfully numb. Regular mattress is out. Had a waterbed for years and that seemed to do the trick. Have a special mattress now that works, also. Then about 2 or 3 years ago I noticed a tingling sensation in my feet as if they were falling asleep. That's gotten worse as time has gone on until beginning the B- vitamins.

With me
 

It comes and goes in my feet but more in calves and it can go
from tinging to screaming. But my poor hands ,elbows,and across
my back. Good luck with your reserch but like j they keep changing
the name. Sue

I'm reading the mag thread you posted about. Will taking a bath in Epsom salts provide absorbed magnesium? Sounds like it might be good for some types of PN pain as well.

Fatty acids I get: Fish oil and other natural sources.
Calcium: Two to three extra strength Rolaids per day.
Vit D: May be necessary. I don't get outside much these days. What is the recommended dose for this, daily?

Sigh, with what I'm *not* allowed to eat being the largest part of my diet these days I do worry about not getting adequate amounts of certain vitamins and minerals. From what I've researched this can make the PN pain worse.

Any help of comments on this situation would be most welcome. :o

I have been diagnosed with muscular pain fasiciculation syndrome also. I was diagnosed at Emory University. I have cramps and painful muscles. My father and several of his uncles have become crippled in their fifties along with two cousins of his. Thier grandfather was also crippled. I began having muscle problems in my mid forties and have the same beginning symptoms as them. The legs eventually become mostly paralyzed. I have been unable to work for the last three years and am pursuing SSDI on the advice of my neurologist. My neurologist just says I have a unknown neuromuscular disorder probably familial. He sent me to Emory and they diagnosed me with the mpfs and said that it wasn't hereditary. I think maybe the mpfs is just part of my problem.

My main symptoms are that I get extremely sore with almost any activity. My muscles cramp easily and even holding the steering wheel or a computer mouse hurts. I also get stiff as a board especially in my legs.

I do have a lot of fasics but they really don't bother me. The Dr. at Emory tested one calf muscle and then diagnosed me with that. When I told him about the stiffness he said you don't look stiff to me. I have six male family members with the same symptoms as mine but he said mine was not familial.
I also was tested at the medical college of georgia but they only came up with a inherited muscular disorder unspecified. So yes I have been diagnosed with it but I really am not sure what to think about it.

I have small fiber neuropathy, myopathy, likely due to a hereditary neuropathy and/or anterior horn cell disease, and yes, I do have fasciculations, frequently.

I was diagnosed through intraepidermal nerve fiber density testing (skin biopsy), abnormal tilt table testing, global anhidrosis via thermoregulatory sweat testing, abnormal cardiac stress tests with significant hypotension with exertion, abnormal gastric motility testing, and muscle biopsy (neurogenic-angulated fibers) in the bicep.

I have sensory and autonomic neuropathy and given the recent muscle biopsy finding, likey a motor component as well.

Fasciculations also occur with some anterior horn cell diseases which need to be ruled out.

Have they ruled out Charcot Marie Tooth Disease (Hereditary Neuropathy)? Recently there has been a surge in the genotyping, and there are quite a few known gene loci. Of course, there are many that are still unknown.

Some adult onset myopathies are also accompanied by neuropathies as well.

It is important that the PN be defined as demyelinating or axonal, and that the cause be thoroughly explored as some PN is treatable.

PN is a broad term that indicates nervous system disease that does not involve the brain or spine (central nervous system).

TSSMITH

Did they do a muscle biopsy? Sounds to me like a x-linked hereditary thing.

I refer you to this website

http://neuromuscular.wustl.edu/