Could it be ALS?

[anna1980]

I'm 26 girl from Poland.Since July 06 I've had a terrible headaches-tightness of face and head muscles.The pain was 24/7 and drugs didt help.During this pain I had dizziness and strange sweet taste in my mouth (I couldnt drink cola,tea and eat chewing gum I couldn even smoke because of that taste.I had my RMI of head and neck and it was ok.In Nov.06 pain had gone but i started to have pain and weakness in my legs muscle also my face muscle and tongue were sensitive to could (feel like numbness).I had some fasciculation till Jan. 07-now they are almoust gone.Since Jan. 07 my tongue became weaker and I feel is shorter than before.Also my jaw is weaker and feet.Ice done my CPK and EMG-1 in Janura only with legs and one of my tongue last week.I still have pain and weakness of my legs and tongue.My neuro doesn't see anything.Im thinking about ALS, because of symptoms I have.Is it possible that my spastic pain of my head and face muscle (7 months) was the begining of ALS?really don't know what to do?Just sit and wait or search for other reason.
P.S I am sorry for my english but Im from Poland.

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

First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.      
   I do not think the symptoms that you describe are related to motor neuron disease (also called Amyotrophic lateral sclerosis [ALS]).  ALS presents with painless weakness, atrophy and fasiculations.  Numbness and pain are not the major features of an ALS presentation.    Your symptoms are concerning and do warrant further testing to determine what is going on.  The alteration of taste is frequently seen as a drug side effect when drugs such as topamax or diamox is used.  Strange tastes are also encountered in some seizure disorders (as an aura).  The headaches that you describe are non-specific, but sound like they could be migraine headaches possibly precipitated by TMJ (tempromandibular joint) issues.  I agree with getting the EMGs of your arms/legs and tongue, to help determine if a neuromuscular disease process may underlie your symptoms.  I would suggest a trial on migraine prophylaxis medication such as elavil, lyrica, nadolol, etc. I would also suggest some screening blood work including CPK, aldolase, B12, ESR, ANA, TSH, copper/ceruloplasmin and vitamin E level.  I would also recommend a repeat MRI of your brain/cervical spine to evaluate for any sign of multiple sclerosis.
I hope this has been helpful.

[anna1980]

I forgot to mention that with my headaches i started to have ringing in my ears.I was taking pills for that ringing but didn't help.I still have it.

[JCmcc]

Dear Friend,
Please be advised that I am not responding to you as a physician and that I am not advising you and that what I write is not meant to be construed as medical advice or a replacement from the forum neurologist, et al.

With that said please try to rest in one single factor: ALS is rare. The second factor is your sex and your age; making this even more unlikely.

Unfortunately-you are suffering with an unknown neurological problem that needs immediate attention.

These symptoms are non-specific and could be accounted for from benign to severe illnesses. I have nothing elseo offer aside from telling you that ALS seems virtually out of the question.

Good Luck!
JCmcc.

[anna1980]

Thank You for reply. I am still waiting for specialist reply.I was wonderind does ALS attaks muscles of head specially on the back of head?My stiffnes, which I had was specially on the back muscle of heas - jaw muscle I think.

[anna1980]

And another question.Should EMG pick up something if I have problems with my tongue or is it to early?

[rcs2]

Dear Anna,

I'm sorry for your problems. Hope the doctor will answer your question soon.

I'm not a doctor, but I myself have been suffering from several non-sepcific neurological symptoms.

I just wanted to add that I think you shouldn't be worried about ALS. As far as I know, there is no pain or any other sensory symptom associated with it. You can do a searc in old posts from this site that might give you some answers.

I hope you all the best,

[anna1980]

I am also having twitching in my tongue time to time, so thats why Im thinking about ALS.My tongue is flat and some of face/head muscle not works (I cant smoke anymore beacouse it is difficult).But my EMG didt pick up twitching.Still waiting for docs. reply

[sfic1]

I wonder if you have heard of Myasthinia Gravis which can affect the muscles of the face. There is a blood test to help diagnose this. It causes muscle weakness and some other symptoms, you should do a search and read up on all the different possibilities. From what I have read about ALS your symptoms don't seem to suggest that, Thank God! I wish you good luck in finding out what is wrong.

[vanhawk48]

Hi Anna
Check out about radiation , Chernobyll 1984  .
I have benn thinking about it myself (  I am from Poland ), although I do have lesions consistent with MS , they still don't know what causes MS in the first place . Currently I am in the process of eliminating everything else .
As of today my doctors have no clue what else to test me for . I do have MS symptoms .
So check with your doctor maybe there are some tests which would lead you in the  right direction .

[anxious girlfriend]

My boyfriend is a very healthy 39 year old.  When we first started dating I noticed that his left eyelid was a little “lazy” or slower than his right (just a little) but I never said anything because I thought he might be self conscious about it.  About 6 or 7 months ago he started getting tingling in his left ring and pinky fingers and also his left foot.  It has progressed into the following symptoms:  Nausea, numb limbs (mostly left- hand, forearm, foot and calf), numb left cheek and chin difficulty breathing or catching his breath at times, occasional raspy voice, blurred or double vision in left eye, twitching and muscle spasms…mostly on left side but now a little on the right, stiff sore neck, stiff left shoulder and back by shoulder blades,  frequent headaches, insomnia, night sweats, wakes up and his left arm is completely numb (asleep), and feels like there is bad circulation to his left hand (red and colder).  These have all gotten progressively worse over the past month.  Over the weekend his left shoulder muscle went into spasms and I could literally see the muscle twitching!

A little health history:  18 years ago he was in an accident where he almost died.  He fractured his skull, the left cheek bone and jaw, broke his collar bone (left) and 3 ribs, and collapsed both of his lungs.  

Something else that I wonder could also be a factor is that he worked at a computer constantly for the past 7 years.  The person who ran his company for him left so he’s been doing everything himself now for about the past 8 or 9 months (wondering if it could be stress related but he still seems pretty calm and together).

He has had blood work to test for vitamin B deficiency and an MRI of his head for MS… clearing both.  We are waiting for the test for Lyme disease to come back and are going back to his Neurologist for more physical examinations this week.  Of course every time he has twitching or numbness it consumes him and he becomes obsessed with it and I feel SO completely helpless.  He thinks it could be something very minor to something as serious as Parkinson’s disease or ALS.  

I would love some opinions or suggestions on what to even test him for.  Please help!

-Anxious Girlfriend