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Neurology (Expert Forum)
Very Scared and Worried - ALS ?
This forum is for questions and support regarding neurology issues such as: Alzheimer's Disease, ALS, Autism, Brain Cancer, Cerebral Palsy, Chronic Pain, Epilepsy, Fibromyalgia, Headaches, MS, Neuralgia, Neuropathy, Parkinson's Disease, RSD, Sleep Disorders, Stroke, Traumatic Brain Injury
Very Scared and Worried - ALS ?
by SCRAPPY, Jul 20, 2003 12:00AM
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!
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!
Doctor's Answer
by CCF-Neuro-M.D.-CS, Jul 21, 2003 12:00AM
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.
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 ....
Best Wishes,
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
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
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.
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 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
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.
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
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