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brian84

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I have tried baclofen, it helped but the side effects for me where to uncomfortable to continue using it. My dr has been trying to push me to try quinine lately...
 

Clearwater AL

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Well... he's a doctor and none of us are (sometimes I wonder though). I'd read up as much as possible on Quinine (as you may already have) before you agree. Wish you the best.
 

Clearwater AL

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I better clarify something from my previous post where I wrote (sometimes I wonder though)... I was not implying the helpful advice from those who share their first hand experience of having ALS as being "Doctors" or those who are caregivers. My comment referred to some very medically detailed (but just vague enough) DIHALS scenarios posted. Maybe created to look for the responses, opinions and feedback. Don’t kid yourself that Neurologists don’t read these Forums. 22,000 members... maybe, just maybe a few are Neuro Docs or "about to be" Intern Neuro Docs. Anything on the Internet is possible. Heck, one of them might be mine!
 

brian84

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Thank you. I guess only time will tell what is happening. It's comforting to know there are other people going through similar things, although I truly wish none of us where going through any of this. I believe that its not als in my case, but something else. My local neurologist keeps saying maybe a variant of als. I guess it doesn't matter what they call it, doesn't really change anything.
 

hjlindley

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take tizanidine for my muscle spasms and it has a good side effect of drying up excess saliva. I get a little sleepy but I'm not driving anyway. No other side effects that bother me.
 

Lucid

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Something that helped me was when i compared my symptoms to the symptoms from mercury poisoning. Then had my filings removed and started detoxing. Since then everything has improved.
 

Mediasmart

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not to second guess but these folks have medical degrees right? Due to the severity of the diagnosis, I would think that my next phone call would be to the county or state commissioner of health.
 

Lucid

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Countries around the world are starting to ban mercury in dentistry. Its just a matter of time before it is banned everywhere. Exactly for the severity of the diagnosed is why the patient should look into ALL possibilities, no matter how unlikely. A medical degree doesn't mean much if the problems a patient has can't be solved.
 

brian84

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Something that helped me was when i compared my symptoms to the symptoms from mercury poisoning. Then had my filings removed and started detoxing. Since then everything has improved.

I have no filings or exposure to mercury so I doubt that's the problem, and Ive had several bad emg's over the past 18 months or so. They say its a mnd or axonal neuropathy.
 

brian84

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not to second guess but these folks have medical degrees right? Due to the severity of the diagnosis, I would think that my next phone call would be to the county or state commissioner of health.

I live in Canada, I'm not really sure who I'd call. I did speak to someone that deals with concerns for the hospital. They where not very helpful. I go back in a month or so and hopefully they will have some news for me.
 

zoohouse

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I'm sorry you are having such a difficult time getting a diagnosis. When you called the hospital did you speak directly to a social worker? Also have you applied for long term disability through CPP? I would ask your neurologist if she would consider an IVIG infusion trial to treat the variant. I live in BC so am not sure about the other provinces protocol, but our neurologist was able to get it for us, this was outside of the ALS clinic. My husband did have some improvement initially, but it had lost its effectiveness so we stopped. The IVIG can be done in an outpatient clinic at the hospital, that is where we did ours. When you go back to the clinic that specializes in ALS, call ahead and tell them that you do not want any students working on you, you have that right. I would also call your neurologist and ask for copies of your EMGs for your files, and bring them with you, although the ALS clinic should have copies to read, but it wouldn't surprise me if they didn't. Then you could ask that doctor to explain why you had 4 bad EMGs 1 normal (theirs) and then another bad one, with them in your hand. Explain to that doctor your financial difficulties and why a definitive diagnosis is so necessary.

Also a quick and safe thing to try for the cramping is tonic water, which does have a small amount of quinine in it, it has helped many here. I use it for my restless leg syndrome at night, and it has helped, when nothing else has.
 

brian84

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Thank you, I was turned down for cpp as I don't have a firm diagnosis. I have appealed and should have an answer to that in the next 10 weeks. I actually got approved for odsp today, so at least something has gone right. I will ask about ivig next time I go to the clinic. They don't seem to want to do much until they are 100% sure what's wrong. did you notice any side effect from the ivig?
 

zoohouse

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As with all medications or infusions, there can be different side effects. IVIG is a blood product so always carries the risk of allergic reaction, but they give Benadryl prior to the infusion. The other most common side effect is headache, so prophylactic Tylenol is recommended. I always had my husband drink a litre of water before the infusion which also decreases the likelihood of headache. He did not experience any side effects at all with his infusions.
 

brian84

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Well I had both my appointments. In December I had a follow up with my local neurologist who repeated another emg (very extensive 1.5 hours). The results where very slightly worse. She tells me she thinks an axonal neuropathy/ slowly progressive mnd, and says the als specialists diagnosis makes no sense at all. A month and a bit later I see the als specialist. He does an emg, that seems to be not very thorough (15 minutes). He tells me he couldn't disagree with her more, and he thinks its post infectious neuropathy still. Says the emg has abnormalities but that he does not know why? In the meantime I feel about the same. The only thing I've noticed lately is that I cant move 3 toes on my left foot, but they look normal otherwise. I'm really not sure where to go from here, or which dr to believe although my local dr seems much more thorough and knowledgeable, the other dr works at an als center.
 
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