What could it be? What;s Next?

[dalanking]

Thank you for this valuable forum!  I am a 50 year old Man. Since the start of 2003 I have had Fasciculations in my arms, chest, back and some in my face and legs.  I saw the neurologist in May & had MRI, full blood tests and an EMG. MRI was clear, CPK was slightly elevated at 208 and the EMG picked up the fasciculations but nothing else but I was never quite confident that the EMG was done with full diligence.  The neuro made a diagnosis of Benign Fasciculation Syndrome but did do a test for Kennedy's Disease. Test came back negative. I started having cramps in arms & hands.  I recently saw 2 drs at a nuro-genetic clinic in L.A. One observed what she thought was atrophy in my left side and they both agreed I needed a new EMG.  I had that EMG two weeks ago and the doctor picked up the fasciculations AND fibrillations in both arms but no fibrillations in my legs/face. No conduction block was picked up. He ruled out BFS.  The Dr. told me that if he had found fibrillations in one more extremity he would have made a dx of ALS then but since he did not he thought I might be in the early stages of ALS or have another disorder.  An Antibody panel came back negative.  I now go back to the Neuro-genetic clinic for whatever is next.  Can you tell me what the alternative diseases could be at this point?  What tests are left to do?  While they are doing tests and waiting for outcomes along the way should I be doing something to ensure the slower progression of the disease in the event ALS is the final word? I'm concerned and anxious.  Thanks.

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

Other areas which need to be tested and excluded include abnormalities within the spine. Either a compressive lesion within the cervical spine or a combination of problems within the cervical and lumbar spines could cause symptoms similar to ALS. Also, inflammatory disorders of the spine occasionally need to be excluded with imaging. Another disorder is primary lateral sclerosis which is similar to ALS, but only involves the nerves coming from the brain, and not the nerves coming from the spinal cord. Other disorders involving the muscles and diseases which preferentially involving the nerves coming from the spine, such as spinal muscular atrophy, need to be considered. Until the diagnosis of ALS is established I would not recommend a particular treatment. However, I would recommend having a visit at an ALS center to have the diagnosis confirmed, and to inquire as to the most recent treatment opitions, and research which is being performed. ALS centers also typically have a multidisciplinary team to address many different issues. Good luck.

[especially4her]

"concerned and anxious"...

I hate it when that happens (grin.) I'm not familiar with ALS but I considered myself professionally stressed out at times, hehehe. Stress is bad and it will only make things worse!

Ok, I have a few tips...

1) The Serenity Prayer
God, grant me the power to accept the things I cannot change~
the courage to change the things I can~
and the wisdom to know the difference.

2) Join a support group
Even if it's an online one, being surrounded by those that have been there, understand, and will just listen are great! One thing I learned in a support group is to "give it to God." Ask God to take the worry, fear, etc away.

3) Health
Eat healthy foods, even the ugliest and greenest vegetable at the grocery store :-) Take a multi-vitamin daily and suppliment your diet with B-12 vitamins (which helps nerve health and helps produce healthy red blood cells.)

4) Relaxation-Disassociation
Find "your" spot where you can sit and think of NOTHING for at least 15 minutes every day. It's harder then it sounds... seriously, you have to clear your mind and stop thinking about your life, take a break!

5) Drugs
Forget Nancy and her campaign to "just say no to drugs" because MEDICINE is a drug. Geez, we had to change the name of "drug store" to "pharmacy." Get real! There is a huge difference between legal drugs and illegal drugs. If you have tried all of the above and are still "concerned and anxious," ask for a referral to either a Psychiatrist or Internal Medicine that can perscribe you with an anti-anxiety medication that works for you, and they can oversee your medication management.

Hope it helps,

Peggy
Not a doctor and I haven't played one on TV ;-)

[dalanking]

I am looking to know alternatives to ALS considering the tests/exam reports stated in my original question.  I already take supplements, including CoQ10, Grape seed exctract OPC, a mult-vitamin, additional E and C, plus atenelol for high BP & Xanax to calm the fasciculations & 20 mg of prozac daily.  As a pastor, I am already in prayer for all this and have a supporting and loving church staff and family around me..... My question really has to do with alternative dx other than ALS.  I want to be proactive and find out as much as I can about what is going on.  

QUESTIONS: Considering: Normal MRI, slightly elevated cpk at 208, abnormal EMG with fibrillations in both arms and shoulders,no nerve conduction block found, a normal Anti-body panel, thousands of fasciculations per day, cramps in arms and hands, doctor noted atrophy in left side but otherwise normal exam. What should I expect next?  Muscle biopsies? More blood tests?  What are the alternative dx still available other than ALS in plain English?  The dr already told me I could be in early als but without the clinical standard of fibrillations in three limbs, that dx is not yet to be made.  But, if it isn't als (and I pray it isn't, What might it be?

Thanks for your response.