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Scott M.

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Hello, My name's Scott. I just found this support website, and am anxious to talk with any one that can shed some light on my problem. a couple neuro's said ALS a couple said no way. One said a slow moving form. The next said "Is that doc crazy" I've had my nerve damage and am losing all muscle in my arms and shoulders for the past 5 years, maybe longer. I go to a neuro in Pittsburgh, Pa. on the 18th of February for a test that is supposed to tell me if I have ALS or not. But I've also been told there is no test. I've been doing chelation therapy and have a high amount of metals, and I've read about Lyme's disease and a lot of Als patients are testing positive for Lyme's. I've had the least accurate Lyme's test done already and came back negative. The doc who did that wasn't interested in anything I had to say and I feel he basically gave it to me to shut me up. Anyway any help will be appreciated. Even just someone to converse with that is going through the same things I am. thanks for reading. Scott
 

ZenArcher

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Scott I'm sorry to say there isn't a single test that will tell you whether or not you have ALS. ALS is diagnosed by a process of elimination meaning you have these symptoms and nothing else is causing them so it has to be ALS. The test regimen normally includes a blood work up, cervical MRI with contrast, EMG and NCV. It can also include muscle biopsy, spinal tap and I'm sure some others I can't think of.

There are several people on here that haven't gotten a diagnosis as of yet which I'm sure will sound off. Either way, welcome aboard but sorry you're here.
 

Scott M.

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Thanks for the reply. I'm here too, but glad for someone who is willing to talk. Like many people here I am scared out of my skin. I don't want my wife going through this even though she seems stronger than me and is keeping me up through all of this. I would like to hear more of the stemcell research and the lithium. I am grabbing at any straws I can. thanks Scott.
 

crystalkk

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Scott,
Sorry to hear what you are going through
Have you seen a ALS specialist?
What tests have you had?
In the last 5 years have you had a emg?
 

DonnaJ

Member
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Feb 6, 2008
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Diagnosis
07/2001
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Hello Scott,

I,m new as well. I've been caring for my husband for eight years now. I KNOW how afraid you are and you have found a good group of people on here to help you through. I know it is easier said than done, but try to relax and keep yourself busy until your appt. in PA.

All I can say is God Bless You and I'll pray for good news for you.

Donna-WV
 

Al

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Hi Scott. Welcome but sorry you had to come here looking for information. Stem cell therapy may hold the answers in the future. I don't know exact numbers but unless you've spent a lot of time in the woods hunting deer etc. the chances are better of being hit by lightning. ALS could be a possibility but so could a dozen other conditions. Chelation therapy will do absolutely nothing for Lymme disease, cancer, ALS, Parkinson's, athletes foot or herpes. Don't waste your money. You could take any one on this earth and those yahoos will say they have too many toxic metals in their body. Did you send the hair samples? They love them. Glad you found us. Get educated. Read our scamwatch and use our search feature.
AL.
 

Scott M.

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thanks for replying. i have had several emgs they show alot of nerve damageto my arms and hands.the last emg was 3 yrs ago. I am originally from NJ. and I moved to Pa.in1987. I am A avid deer hunter and fishermen and have been bittin by ticks in my past.also i used to ride horses in the woods alot. In fact my mothers blacksmith tested positive for lymes. but it tooks years six tests and a mild heart attack to find out he had lymes. I have read here in this forum that people with als some are testing positive for lymes also read it on the lymes internet. thanks for reading. Scott m.
 

Al

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Knowing that now I'd say that you've got a better chance of having Lyme disease than being hit by lightning or having ALS. It helps to have all the facts to form an opinion.
AL.
 

Scott M.

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hi everyone went to pittsbugh to the head neurologists he confirmed i have a slow form of als. he said im in very good shape for having it for 5 yrs. nothing else good to say though. hes testing me for three heavy metals one i remember is copper also a lymes test western blot but i only think hes doingthat to humor me. he also said a study the did in italy using lithium looks very promising but buy the time it gets here could be years.nice ! other than that everythings as good as it can be. hope the same for yoy Scott M.
 

CindyM

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Hi Scott- I am sorry it is ALS but glad it is slow-moving. My hope is they find a cure before it really gets you! Cindy
 

ZenArcher

Senior member
Joined
Feb 22, 2007
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Sorry to hear about the diagnosed. Concerning the study in Italy it was with lithium carbonate which your doctor is more than capable of prescribing off label for ALS. Talk to your neuro and if you're interested and he won't prescribe it talk to your GP. Again, this is only if you're interested. Nothing has been proven yet with lithium.
 
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Scott M.

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the neuro that i just went to in pittsburg who is head of the neuro told me that its not available yet.Thanks for the web info am going to check it out.dont understand why he would mention the lithium and tell its not available? went and had more blood drawn for more lymes testing to go to california,lab. thanks again Scott M.
 
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