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Midnight

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Hello you great people:

So...after finally tracking down an MD clinic that does work with ALS patients, I spoke with them found I absolutely have to have a referral from a doctor, regardless of the type of insurance I have. So, I have to go to my normal doctor to get a note saying that he thinks I should be looked at by somebody else.

Since I am going, I am going to get all the bloodwork that I need while I am there and I wanted to get suggestions so I can just ask for it ALL AT ONCE instead of getting everything in pieces.

I know of these so far: CBC, Lime disease, Syphilis (although I am married with 3 kids, I guess it is one to rule out from what I have read).

Any suggestions?

And by the way Al, you are truly a hero...I have gone through this site looking at the slide show and at the photos of your hand and your story and you have deeply touched me by your story and I am sure you have touched the lives of many...

And... some of the other ladies and mommies...through their gentle words guiding scared people that happen to pass through. You people are amazing.

I actually run a cancer camp for adults with cancer so they can get away with their family and close friends or caregivers for a weekend a year cost free and enjoy a weekend away from the stress of their life and get massages, manicures/pedicures, facials, Reiki or just sit under trees in the mountains together do crafts, or let the kids play or do Archery or do climbing walls (or grandkids) and in reading this site ALL I could think of was ....that I hope that there is something like this for ALS.

I can tell that there is a sense of "community" on this forum, and I can sense the compassion online (as hokey as it may sound), but I also hope that there is more. I know that with cancer I have lost some close friends, very young ones in their 30's, but also there is treatment and I just hope that ALS has some sort of camps or activists putting organization into LIFE so that people can live and enjoy it together in that community.

Anyway...sorry for the ramble..my weak shaky hands have got to go work on cancer camp :)
 

westjlittle

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Midnight,

My neurogist went through quite a few blood tests before my diagnosis. They were not all performed at one time. The most common things were first then the esoteric diseases.

There was a blood test that may indicates for myasthenia Gravis. I remember at least two genetic tests but can't remember what for. Some basic muscle function things like calcium and screening for 'bad' stuff like lead.

Once we were past the common things, my doctor laid it on the line. He felt it was ALS and that the other tests were longshots. We did them since it would be good news to have one of the longshots. By the time I got the referal to the ALS clinic in Denver, ALS diagnosis was a done deal. The ALS clinic doctor merely confirmed it. Its going to take at least a month to get bloodwork done. You probably need to have a nerve conduction study.

The reason for the referal is to maximize the ALS clinic's time with ALS patients. If you actually had lyme disease, another doctor should be able to figure that out. A neurologist should be able to figure out whether you have ALS then refer you to the expert. At the end of the process, you should work with the clinic if you have ALS.

Jim
 

ltr

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Midnight - I really enjoyed reading your post. What a kind and caring person you are, helping others the way you do.

we were just recently saying how the neuro's hate to be told by the patient what tests to run, so try to say it with ease! Some of the tests that I know are important are an absolute definite thyroid panel, urine for heavy metals, cholinesterase, aldolase, ast, sgot, cpk. Many of those check muscle involvement and are usually the first things they check. Also, ana, rheumatoid factor and sed rate are checked. Sometimes lupus panels are run. This is probably enough from me! I really hope everything works out for you. Leslie
 

Midnight

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thank you so much for this information...it is so incredibly helpful.
 
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