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Mathew

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I'm in process of being officially diagnosed. Noticed in July, middle finger would draw back all the way. Now right hand curled, no strength, right foot slaps when I walk. Everyone asks what's wrong with me. Left foot weak, left hand weak , middle finger droops on this hand now. Muscle ripples in arms and legs. Wears me out to get dressed. Now dr. Called and said my 24 hour urine collection test shows very low copper levels. Did a blood test for that last night. If confirmed , will have to treat immediately . Has anyone heard about copper levels being low with ALS? This is the only test that has come back not normal. We have already about ruled everything else out besides ALS. Would also like to ask, am I progressing fairly fast? Doc. won't really tell me, but kinda thinks 1-3 years survival.
 
Hi Mathew,

Welcome. Sorry about your diagnosis. I am not at all knowledgeable of anything medical - but I do know low copper levels can be attributed to thyroid gland among other things. There are meds for that. I don't think it's related to ALS but someone will correct me if I'm wrong.

Everyone's progression ( stupid expression) is unique in terms of symptoms and longevity. I try to focus on TODAY- and not fret about the future as abbreviated or long as it may be. I am not always successful, but try.

Have you been to your ALS clinic yet? Once you meet your team - your OT will teach you tricks for dressing and other everyday chores. I do highly recommend a bidet toilet seat sooner, rather than later. You won't be sorry! If you need info, Bidetking website has a list of all make & models, videos and comparisons. Then you can check around - Amazon has some decent pricing.

Another invaluable resource is on youtube: "A B C's of ALS" - a three part informative seminar by Forbes Norris ALS research Institute. My family and friends watched it. It's excellent.

Glad you found us!
 
Thanks so much Elaine ! Haven't found a clinic, am going to Barnes in St.Louis sometime soon I hope. Nuerologist is setting me up a second expert opinion . I have read a lot at forums about bidets. Am very concerned about that stage. I am still working but drains me just getting there. I do manual labor so getting where can't do a lot.management very understanding but I think I might use my vaca. and sick days till I can get short term disability going
 
Matthew,
I would call your doctor's office and ask what your copper level is? They should be able to give you a number. Copper levels in the single digits are a major flag. Low copper levels can present with neurological symptoms. You can look up "copper deficiency" on line for associated symptoms. Low copper and/or (zinc poisoning) has been misdiagnosed as ALS. Many times low copper is associated with high zinc levels. Ask if you should start supplementing with copper. If so, what type of copper and the dosage. Your doctor may elect a series of copper IV Infusions. Hope this helps, my friend. Good Luck.
 
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My blood test on the copper came back normal unfortunately ... Have now run out of tests... Still hoping something will come up, maybe at Barnes hospital. Not getting hopes up, but not letting them down either! Thanks for your reply !
 
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