Benign Fasiculations or Lazy doctors??

[Tired of this]

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I have been plagued for 8 years with this and the first diagnosis I have received is benign fasiculations... I think it's CRAP.

Symptoms are fasiculations in the hands only, in the muscle between the forefinger and thumb. My other fingers also curl slightly inward (you could probably say that it looks like I would be holding a baseball) when having an "episode". They are not painful at all, but I can feel them coming sometimes by aching in my hands and forearms. I can move my fingers during an episode but it takes much concentration to do so.

The fasiculations only happen in the HEAT. I have been literally stuck in the air conditioned house all summer for the last 8 years. Once the local temperatures reach over about 76 degrees for a couple days in a row my body reacts by overheating within minutes of exposure or exertion and the fasicualtions start. I have tested my body temp after sitting outside in the shade for 30 minutes on a 85 degree day, my temp was 102 (oral) within 15 minutes in the house it had dropped to 99 and within an hour was back to my normal 97 the fasiculations lasted for 2 hours after I came inside.

I have seen 2 different Neuroligists and 2 Rhumotoligists... All my bloodwork is normal as well as the MRI of my neck and the NCV and EMG tests...
I have been seen in an urgent care clinic during an episode, I had no signs of anything else but these stupid hands freaking out.

They are crippeling, when I am having an episode I can harldy move my hands. My fingers lock if I try to extend them, I cant leave the house..

ANYBODY got any ideas?????

 

[drimg]

I want some details

1. Does it occur ONLY in hot climate?

2. Have u ever seen it when u had fever?

Fasciculations only limited to a part of body HIGHLY unlikely. And also the movements of ur fingers cant be attributed solely to fasciculations. It seems like a focal motor seizure. Cause can be a plaque of demyelination which is showing Uhtoff's phenomenon.

What i would like to do if i were ur physician

1. I would do a VIDEO EEG in hot environment - that would rule out or show any seizure activity in ur brain

2. MRI "BRAIN" - To me the activity is from cerebral cortex

3. Transcranial Magnetic Stimulation over the respective area of brain.

If u r interested u can contact me.

 

[neurologist]

I have been plagued for 8 years with this and the first diagnosis I have received is benign fasiculations... I think it's CRAP.

Symptoms are fasiculations in the hands only, in the muscle between the forefinger and thumb. My other fingers also curl slightly inward (you could probably say that it looks like I would be holding a baseball) when having an "episode". They are not painful at all, but I can feel them coming sometimes by aching in my hands and forearms. I can move my fingers during an episode but it takes much concentration to do so.

The fasiculations only happen in the HEAT. I have been literally stuck in the air conditioned house all summer for the last 8 years. Once the local temperatures reach over about 76 degrees for a couple days in a row my body reacts by overheating within minutes of exposure or exertion and the fasicualtions start. I have tested my body temp after sitting outside in the shade for 30 minutes on a 85 degree day, my temp was 102 (oral) within 15 minutes in the house it had dropped to 99 and within an hour was back to my normal 97 the fasiculations lasted for 2 hours after I came inside.

I have seen 2 different Neuroligists and 2 Rhumotoligists... All my bloodwork is normal as well as the MRI of my neck and the NCV and EMG tests...
I have been seen in an urgent care clinic during an episode, I had no signs of anything else but these stupid hands freaking out.

They are crippeling, when I am having an episode I can harldy move my hands. My fingers lock if I try to extend them, I cant leave the house..

ANYBODY got any ideas?????

Very interesting. I think I disagree with DRIMG's line of thinking that this may be epileptic seizures, (unlikely in my mind given duration of symptoms during attacks and the fact that it seems to affect both limbs symmetrically). I doubt an EEG will be of much use.
Demyelinating process such as MS is possible; you say you've had an MRI of your c-spine -- what about MRI of your brain? However, 8 years of the same symptoms with nothing else doesn't really sound like MS. Do you have any other neurologic symptoms?
What this sounds most like to me is a form of dystonia; typical neurologic testing is often normal (except for an an EMG done at the time you were actively symptomatic, and in some cases genetic testing) and diagnosis is generally made based on clinical observation. There is also something called "cramp-fasciculation" syndrome, which I have to admit I don't think I've ever actually seen in a live patient, but it sounds as if you'd fit the bill. I think the fact that this has been going on for 8 years suggests it's not something life-threatening like ALS. Again, any other symptoms (especially weakness, muscle wasting or incoordination) in the affected limbs?
Well, that's my 2 cents for now. Good luck.

 

[neurologist]

Very interesting. I think I disagree with DRIMG's line of thinking that this may be epileptic seizures, (unlikely in my mind given duration of symptoms during attacks and the fact that it seems to affect both limbs symmetrically). I doubt an EEG will be of much use.
Demyelinating process such as MS is possible; you say you've had an MRI of your c-spine -- what about MRI of your brain? However, 8 years of the same symptoms with nothing else doesn't really sound like MS. Do you have any other neurologic symptoms?
What this sounds most like to me is a form of dystonia; typical neurologic testing is often normal (except for an an EMG done at the time you were actively symptomatic, and in some cases genetic testing) and diagnosis is generally made based on clinical observation. There is also something called "cramp-fasciculation" syndrome, which I have to admit I don't think I've ever actually seen in a live patient, but it sounds as if you'd fit the bill. I think the fact that this has been going on for 8 years suggests it's not something life-threatening like ALS. Again, any other symptoms (especially weakness, muscle wasting or incoordination) in the affected limbs?
Well, that's my 2 cents for now. Good luck.

forgot to add this bit of advice that logically follows from my prior post: Your next visit to a neurologist should be to one with a subspecialization in either movement disorders or neuromuscular disease. I bet you are headed for some Botox injections down the road and I bet it would do you wonders.