Very Scared and Worried - ALS ?

[SCRAPPY]

I am scared and worried for my family ....
I am a 40 year old male who has experienced muscle fasiculations for the past 2 years. These fasiculations occur all over my body (legs ; feet ; hands ; arms ; back ; buttocks ; stomach). About 9-10 months ago I had seen a Neurologist because I was feeling "flu-like" aches and pains "ONLY" in my legs in addition to my fasiculations. The leg pains lasted about a week. The doctor did an examination and I also had an EMG which came back normal. The fasiculations have continued since then. Here is my problem. During the last 2-3 weeks I have been experiencing "flu-like" aches and pains which are quite uncomfortable on "ALL" of my limbs ( wrists ; forearms ; legs ; feet ; hands ; hips ; shoulders). The pain is not bad enough for pain killers but it is getting close. The fasiculations are continuing as well. I do not notice any physical atrophy in my muscles or serious weakness. Can you please help me with the following questions :

(1)  If I had a normal EMG about 9-10 months ago is it unlikely that I have ALS ?

(2)  Should I consider another EMG as soon as possible ?

(3)  Should I take any specific type of blood test ?

(4)  I have read that fasiculations normally occur during the later stages of ALS ( after diagnosis ) ... Is this true ?

(6)  Have you seen patients who have experienced similar symptoms ( "flu-like" aches and pains and fasicultaions ) who did not have ALS ?  If so, what are some of the possible causes of the symptoms ?

Please respond thoroughly and as soon as possible. Thank YOU!

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

EMG tests are very subjective, and therefore, it is impossible for me to comment on an EMG performed by another physician with viewing the report. That being said, in the early stages of ALS it is possible to have a normal EMG, however if an extensive study is performed usually some abnormalities are found. It is not true that fasciculations only occur in late disease. Often, the patient has ignored the fasciculations and presents to the neurologist with weakness, and the neruologist then points out the abnormality. It is also possible to have cramps with ALS. If your symptoms have changed and are getting wirse, then I believe a second opinion with a neuromuscular neurologist is recommended. These are neurologists who have completed sub-specialty training in neruomuscular disorders such as ALS. We have a strong neuromuscular department here at the Cleveland CLinic foundation, but you can search out other good centers by looking for ALS centers. Other possible diagnoses include cervical spine disease, Vitamin B12 disorders, inflammatory disorders of the spine, and primary lateral sclerosis ( a disorder on only a certain part of the motor system). The last disorder, which is a diagnosis of exclusion, is benign fasciculation syndrome. I hope this helps.

[SCRAPPY]

God Bless You and thank you for your advice ...
I live in New Jersey and I have contacted the ALS Clinic at Robert Wood Johnson University Hospital in New Brunswick, New Jersey and have made an appointment.

2  QUESTIONS ....

1 - Is this an excellent ALS clinic ?
2 - What tests should I expect to have done in order to completely rule out ALS ?

PLEASE LET ME KNOW AS SOON AS POSSIBLE ....

[kael]

Hi -  I just read your post - please read mine from today.  Your symptoms sound identical, only mine are more severe and came on quickly (in only 10 weeks.)  Do your fasciculations worsen by the muscles being touched or stimulated?  Do they get far worse at night?  Do they bother your internal organs and cause diarrea (diarrhea) or dry heaves?  I have lost 20 pounds in the last 4 weeks.  This is very scary, I know.  Please let me know what you find out as I am searching for an answer also.  By the way, have you had any blood work done to check for an autoimmune disease?

Best Wishes,
Kael

[SCRAPPY]

Kael,
I will read your post when I get home from work and will respond to you tonight 7-22-03 ....
May God Blees You and give you strength during this uncertain time ...

Best Regards ...
SCRAPPY

[kael]

Hi-

Just checking in on you to see how you are feeling.  Anything new and how are you coping.  I left a long post under my question tonight to update on my progress.  Please respond if you wish - I'm thinking about you.

Kael

[DrHelp]

please please--
check into and do your OWN research on growth hormone deficiency and neuroendocrine causes of symptoms.
many doctors are uneducated about this
you can find some symptoms at hgfound.org
magicfoundation.org

GHD of adults affects the muscles, causes weakness, which in turn can cause magnesium deficiency that can cause the tremors and muscle twitches.
IGF-1 is a useful test for GHD.

[DrHelp]

i did some more research into ALS and found that it CAN be related to a growth hormone deficiency-- and many could benefit from recombinant GH injections.
i take GH injections and i have my life back.
GHD affects every cell in the body and is associated with MANY other syndromes such as lymes disease, fibromyalgia, diabetes, and more.

anyone wanting more info on this (ALS) can read about how GH ties in with this at this link:
http://www.lef.org/protocols/prtcls-txt/t-prtcl-008.html

join support group at hgfound.org
or http://www.growthhormonedeficiency.org/

[Leif]

I tried to access: hgfound.org, but it requires a password and user name.  How do we get in?

Leif

[DrHelp]

hello-
i will check into this and ask the administrator.
it never used to do this or require a password.
i will get back to you once i find out

[DrHelp]

the hgfound.org website is back up and working now to all--
the last 2 days they had a problem and after i told them about it, they corrected it.
you will not need a password or such--- just go to the website and it should be up now.

[kael]

Hi-

It's Kael.  I know your appointment was yesterday and I'm so hoping you'll read this and post how it all went.  I have thought about you every day and I want you to check in.  Please post on this thread or under my thread - or you can e-mail me at ***@****.

I'm keeping positive thoughts for you and your family.

With Love,
Kael

[Cramos]

I am looking for some answers.
I am a 25 year old hispanic female.  I have very mild CAH (congenital adrenal hyperplasia), and I take 2.5 mg of prednisone daily. Last year, I was on an Isoniazid treatment of 9 months due to a positive skin ppd (tuberculosis).

For years I have been experiencing dizziness and faintness and drops in blood pressure, but recently, along with my usual dizziness and weakness I have been experiencing a heavyness in my arms and legs, a weakness I can't seem to explain.  It is almost as if when I lay down or sit down, my legs feeled nailed to the bed or the floor.  Its like I have to think about moving them, since they feel so heavy.  I've recently also been having back pain. It started with my lower back and I though I was sleeping wrong, etc., but after almost a month, this pain has spread throughout my back.  It almost feels like flu pain, when your muscles ache.  I am starting to get a bit concerned because these episodes are becoming more frequent, usually they would be months apart, but last Tuesday I got this way and yesterday (almost a week later) I got it again. This last one has even lasted longer...I still feel a bit weak in my arms and legs.

My paternal grandfather had Multiple Sclerosis and I wondering it I could be developing this.

Please let me know if there are any suggestions as to what I should do.

thank you.

[MFL]

My brother was diagnosed 2 years ago with ALS.  He has deteriorated substantially.  A few weeks ago we learned about the possiblity that some ALS patients are actually suffering from Lymes disease.  Lymes disease can sometimes mimic ALS and other motor neuron diseases.  So, after speaking with another ALS patient who was diagnosed with Lymes Disease and starting to improve with antibiotic therapy, we went to a Lymes Disease specialist.  My brother was tested positive for the Lyme bacteria (or spirochete) in his blood.  So he has now started antibiotic therapy. Not enough time has passed to assess any improvement.

This treatment appears to be somewhat controversial, as most medical professinals do not recognize the relationship between Lymes and ALS.  But after watching my brother deteriorate with no medical treatment available under the ALS diagnosis, he is trying the Lymes disease therapy and taking antibiotics.

I'm not a physician and I don't know whether it will work yet, but it's the only shot we have.  But I have spoken to experts in the Lymes disease area and they strongly believe that Lymes disease is grossly underdiagnosed.

I raise the issue only as an option to you.  You might want to further investigate it.