Benign cramp fasciculation syndrome?

[Cutehunter]

Hello, I am new to this site and appreciate yalls voices on other ppls concerns. I've been having fasciculations since August 2016 and cramps in my lower legs and ankle muscles and some occasionally on my forearms. I've had 3 emgs done and the first said early motor nueropathy but cldnt rule out spinal issues, and mild distal chronic denervation. 2ND emg was 6 months later and improved, no motor nueropathy just fasciculations and the 3rd which I just had showed just fasciculations, and no positive sharp waves and fibrillations. The neuromuscular dr told me benign cramp fasciculation syndrome but I am worried sick about als. Wld I be worse off after a year of fasiculations and cramping? Thanks for reading any help wld be appreciated. I have horrible health anxiety also btw.

 

[Nikki J]

Please read the read before posting sticky in this subforum. You obviously did not note the sticky about posting in the general forum either

 

[Cutehunter]

Sticky? What do I need to do to get this on thread? Thanks.

 

[ShiftKicker]

In the DIHALS subforum there are several posts permanently at the top of the list of threads. One is labelled "READ BEFORE POSTING". This is the thread Nikki is referring to. Many of your questions will be answered there.

 

[Cutehunter]

Ok thank u. But do you or Nikki have any thoughts on my matter before I go to that section? Any advice wld be very helpful. Thank you.

 

[ShiftKicker]

Feel free to post the questions you have AFTER you read that thread. A lot of work went into it and it clearly outlines many different issues that people have questions about. We really do mean it when we ask that you read it FIRST- before posting. Please respect the forum rules.

 

[GregK]

Also be aware that this ISN'T a BFS forum. Please find that forum for ANY BFS concerns.

 

[Cutehunter]

Hi greg, Nikki , and shiftkicker, I have now read all the stickys and alot on the forums and I'm sorry for the miscommunication earlier. Btw I'm sorry for you guys/gals who have been diagnosed with this awful disease. But from what I've read, I haven't read anything that's similar to what I'm going through somewhat and I'm asking for help. I'm a 36 year old male, starting having fasciculations in august 2016 and muscle cramping in the abductor hallicus muscles in mainly the right ankle and sometimes in the left but minor, but also cramping in the outside of my hands, u can actually see the hand cramp and it's very painful and wakes me up at night. Cramps also in the calves that wake me up at night and during the day. Blood work is normal. And now a chronic cough and throat clearing and I'm not sick in any way. This has been literally harming my marriage and work ethic by constantly worried it is ALS. I don't know how to make it stop, even when dr told me it is not als but wldnt explain further. I have dr harati from baylor who doesn't have the best personality either. But my first emg showed early mild motor nueropathy with chronic distal denervation. And polyphasic fasiculations but no psw's and fibs. Any advice wld be helpful and again I have looked at the stickys and alot of posts but none to my knowledge have shown what I have going on. Thanks.

 

[Cutehunter]

I also have with the other symptoms mentioned, have pain in the neck muscles along w fasics in the neck also. I will also be making a donation to this site for yall, yall have helped so many ppl despite you're own diagnosis. Thank you.

 

[codyclan]

So if none of the posts address your symptoms, then it would seem that your symptoms don't fit ALS. A doc told you no ALS, so you should probably follow up with your doc to find out what he thinks is the differential diagnosis as it does not sound like ALS.
Best wishes to you,
Tracy

 

[Cutehunter]

Hi tracy, sorry let me rephrase what I mentioned about the other posts not being like mine lol, I have fasics like most but I also have feet, hand, and calf cramping that I haven't really read much about. Along with hoarseness Bc I'm always clearing my throat/dry cough. My babinski and hoffman were negative but first emg said mild chronic denervation of distal muscles and early mild motor nueropathy. No fibs or psw's. Just wld like some input on this. Sorry if I offended you.

 

[Nikki J]

Your most recent EMGs have been normal. Whatever caused the non ALS abnormalities in the first seems to have resolved so forget about it. Your symptoms appear to be cramps and twitching now neck pain and your throat/ cough issues.

Cramp fasciculation syndrome exists and is your current dx. Neck pain is not a presenting ALS complaint. You should be evaluated for your throat complaints by your pcp. Could be anything including allergies or asthma. It does not sound like ALS to me.

You apparently had a normal clinical exam and no clinical weakness? No weakness, normal exam and EMG after a year? weakness usually proceeds twitching and if someone doesn't notice weakness the neuromuscular doctor will find it.

If this is ruining your life talk your pcp who may recommend counseling

 

[Cutehunter]

Nikki for sure I am already seeing a psychiatrist at least once a month and i already signed up for over $2 million of life insurance for my 18 month old daughter just in case it is als lol. I seriously believe something is wrong, why the cramping on the abductor hallicus muscles? Hands? Calves? Blood tests all normal, I'm just a wreck. I've been to an ENT dr also and while I do have mild GERD he can't explain my hoarseness, but hoarseness is only Bc of my constant cough. I did forget to mention that I have a absent right sural sensory nerve, which is not like als but in a small amount of ppl have had this with als. Thank you so much for you're response. It's really appreciated. I go for another emg in 2 weeks at houston methodist. My tongue feels like its burning also, been like this for about 6 months now but I forgot to tell the dr.

 

[Clearwater AL]

Cutehunter, in a previous post you wrote...

"This has been literally harming my marriage and work ethic by constantly worried it is ALS."

"I don't know how to make it stop, even when dr told me it is not als but wldnt explain further."

"I have dr harati from baylor who doesn't have the best personality either."

When doctors have a patient (you) trying to "convince" them you have ALS when it is clear to them you don't... they lack the desire to explain further and their personality towards you will be terse. But... because of possible litigation they have to go further down the diagnostic path to whatever end.

What makes a Neurologist smile at the end of a very profitable day?

Google, the Internet and Health Anxiety.

 

[GregK]

mod Note: Closing Thread.

This thread has run its course, CH.

Every time you're told a symptom isn't ALS, you come up with a new one.
And you keep recycling old ones.

Do NOT start a new thread with these non-ALS symptoms.

If you do so, you will be banned.

However, do seek the help of your Doctors and Psychiatrist, please.