Twitching for almost 2 years now...

[sunnygal]

Hi, and thank you for your assistance.  I have been twitching for almost 2 years, bodywide.  I have alot of twitching above my knees and they buckle alot when I walk.  I have not fallen down.  They also ache both on top and behind them.  My last EMG showed fasics only in just about every muscle stuck.  Nothing else was abnormal.  Although I do have bilateral hoffmans sign and brisk end of normal reflexes.  I am still consumed with the fear of having ALS.  The neuro said no, but, my sx's are not subsiding.  I am 27 (f).  Could I have ALS, but be in the early stages when it is difficult to detect?  Thanks.

[CCF-Neuro-M.D.-CS]

Given your age and duration of symptoms it would be unlikely that you have ALS and have not progressed. There is an entity called benign fascicluation syndrome which involves fasciculations which come and go over time without any other clinical signs. This may be a possibility in your case. The EMG helps exclude other muscle pathology. I assume you have had a brain and cervical spine MRI completed. If you have not it would be reasonable to document that they are normal. If you are still concerned, then I would recommend having a consultation at a ALS center. A center near you can be found by going to the ALS website. Good luck.

[mls2go]

Hi Sunny- Not a doc, but I read your post and couldn't help wondering if their are other tests that can be performed that would perhaps give more of a revealing diagnosis.  ALS is pretty darn serious and I think you as a patient have a right to explore all avenues of information  and your Nuero has a responsibility to provide you with the best care possible in order to conclusively diagnose this disease or set your mind at rest that this is not what you have.

Has the twitching gotten increasingly worse over the last two years or has it basically stayed the same?  Above the knee sounds like the large muscle (the quadracep) that's twitching and locking.  The back above the knee would probably be you Hamstring.  When those lock up that must be painful.

Do you have twitching anywhere else on your body, like your face, hand tremors, feet, any myclonic jerks before or during sleep that wake you up?  Just curious.

Hope you can find some answers.  Good Luck

[espm4]

Regarding the curiosity of the last poster's comments, can you say what those symptoms would lead you to believe?

[mls2go]

Hi es - Since Sunny got an answer from the Nuero on this forum, my trail of sx's were simply possibilities of other problematic diseases if Sunny did indeed have these other sx's, which I guess she doesn't.  I was just concerned because Sunny didn't seem to be getting the attention she needed from her doctor and if ALS is on the table as a possiblity it should be taken very seriously and tests should be taken for rule out and for the peace of mind of the patient.

[sunnygal]

Hi!  I do not have the myoclonus jerks, but, my twitching has increased.  The twitching is pretty much body wide:  calves, upper arms, above the knees, sometimes bridge of nose, back...pretty much all over.

[sunnygal]

Hmmm...although since a child I have had these jerky movements (bodywide).  The first time a dr. noticed, it was my dentist, and he asked why I jerked so much.  That was at age 9.  Not sure what that could mean?

[mls2go]

Hmmm-Well, you should see a Nuero, that's for sure, if you haven't already for at least an MRI to see if there's anything abnormal going on in your brain that would be causing this.  Even if it comes out Negative there are some medications that can be taken to keep the jerking under some kind of control and the Nuero would know which ones.  It could be anything at this point, but if it's been going on since you were 9 (on and off?) you owe it to yourself, your body and peace of mind.

In the year 2000 I started having non-epileptic seizures after massive migraines.  I was also jerking involuntarily all over different parts of my body.  Nothing showed up on the EEG, but on the MRI I was diagnosed with severe Cerivcal Stenosis.  The Neurosurgeon I spoke with said this "MAY" have caused the seizures, but he wasn't sure. My Nuerologist (who is the greatest by the way) gave me some anti-seizure medication and I've been doing pretty good so far.  I'm being monitored constantly and there's been some real progress.  

Anyway, I hope you can get some good care and find out what you have so you can get something to help you.  Good luck.

[kwag]

You did not comment on what you are doing to regain your health like with your diet.  I suggest that you pray and seek God's help with this matter.  I also suggest calcium magnesium supplements, and seeing and alternative practitioner.   Many illnesses are brought on because our immune system is not able to take care like it is inteded to.  Find out what measures you can take to strengthen  your immune system.  Sugar absolutely depresses your immune system and that is just one factor.  Explore what you are doing in your everday life that is disabling your system and make changes.  God Bless