funny taste in mouth

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lance

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Feb 21, 2006
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Hey everyone, just wondering if anybody else has a funny taste in there mouth, almost like a tin taste. Not sure if it's from the medication and supplements or a normal symptom of ALS. I'm on Rilutek, Effexor, CoQ10, and 800 VE. Also, I have a buddy doing some snooping (research) and he's been told by several Holistic and Phamacists that maybe I should be taking Omega 3-6-9 and grapeseed extract, Anybody else tried these?
Right now I have upper body weekness, mostly right arm ( maybe 50%), having difficulty doing up buttons, zippers, brushing teeth, shaving, etc. Any good advice on how to modify or simplify everyday items - I have had velcro attached to some dress shirts already, seems to work.
Driving, I can still do. but wondering when I should be telling insurance company about ALS? I have no problem whatsoever handling the vehicle as of right now - but was wondering if they would concel my policy if they knew the truth! Any suggestions?
That's it for today - appreciate any responses

Lance


Life's a Journey - not a Destination ( Steven Tyler)
 

John1

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Hi Lance,

I don't have a funny taste in my mouth. I take all the supplements you do except Effexor. I have been taking grape seed extract for about 4-5 years as one of my anti-oxidants. Like everything else, I don't know if it helps or not but I'm still here.

As for notifying your insurance company, I have not and will not unless they ask. I am licensed to drive, the government knows I have ALS, my doctor certifies annually that I am able to drive, I know my driving is ok so why tell my insurance company who would have no idea about my driving competency and likely would pull the plug just to be on the safe side.
 

hope

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Oct 1, 2005
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Lance, are you using a nutritional supplement like ensure? This can leave a tinny taste in your mouth.

sandy.
 

marlo

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Feb 20, 2006
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Hi Lance
In reguards to the tinny taste, YES, VERY BAD. The only thing i take for the ALS is coq10 and i had the taste long before that. I would kiss your feet if you were here. I thought it was all in my head cause about six different doctors can not explain it. I don't know how to get rid of it, but at least it helps to know i am not alone. So thanks for asking the question. I also bled into my mouth from somewhere other than my teeth or gums for over 14 weeks. MRI's CTscans, X-ray's etc thaning can explain that either. It is better now, but not the tinny taste.
Marlo
 
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Paul Wicks

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My medical counterpart, a neurologist, got interested in this a few years ago but never got anywhere. One possibility was it was the Riluzole.
 

Al

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Lance if I was you I'd say nothing. I had a friend that had sleep apnea which is not a big deal in the grand scheme of things but his doctor reported him to the DOT and a big deal was made of it. If your doctor hasn't told you shouldn't be driving I'd just try to stay out of accidents and say nothing. My dad was 88 and I took him to the eye doctor. The guy said even though he was blind in one eye he could still drive Legally: but the doc said he probably shouldn't be. So he quit. My doctors know I'm not an idiot (contrary to what my wife might think) so when they decide or I decide I'm not up to it I'll quit. Till then Keep on truckin.
 
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