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Thread: Als and my fear

  1. #1
    Join Date
    Jul 2017

    Als and my fear

    I started having neuropathy problems 2 months after i was diagnose having diabetes, now my sugar levels have never been bad so when my a1c hit 7 around christmas my dr decided to put me on meds. I mentioned my feet that i had big toes that were numb, she sent me to a neurologist, he did emg/ncv and came up with poly neuropathy due to diabetes and toxicity of b6 (now I don't take supplements), i started twitching all over my legs of course i used dr google and what comes up with als now I'm down the rabbit hole, i showed up at my neurologist office to have another emg on the left side emg showed all zero once again and ncv was showing neuropathy . Still going through the web combing every story about als and my legs twisting and losing weight because i have lost my appetitive. As I'm writing this my calves are twitching. In two weeks i am going to a a specialized clinic where the dr specializes in als and perpheral neuropathy, because my neuropathy doesn't make sense. I also just started having pallesthesia, which i just found out that name but anytime i am in the shower washing my thighs and putting underwear on or pants the bottom of my feet vibrate. I stay petrified all the time.

  2. #2
    Join Date
    Feb 2017

    Re: Als and my fear

    Hey, I read both your posts. I've had the same fears. I have peripheral neuropathy due to a genetic mutation--it's called CMT--for whatever reason mine kicked in last year at the age of 37.
    Let me tell you: ALS has an abnormal EMG, normal NCV; we have the opposite, normal EMG, abnormal NCV.
    Also--ALS is motor only, we have weird sensory stuff.
    I've had this problem over a year, still walking and typing ok but with slowly progressive weakness and muscle wasting in small muscles. My prognosis is that I'll probably need ankle-foot braces and may need to switch to a less typing intensive job.
    BUT--the symptoms are very annoying!
    The twitching comes with any motor nerve damage (as well as there being a whole world of benign twitching).

    Please consider getting your blood sugar down even if it's not that bad. I gently suggest you're fixated on ALS to avoid thinking about the real problem. I think I did that.

    Unlike me, you have a chance to reverse your PN by lifestyle changes! Please take your diagnosis of diabetes seriously.

  3. #3
    Join Date
    Jul 2017

    Re: Als and my fear

    thanks for replying , it makes sense and i know i most likely being irrational about this. i am seeing an endocrinologist next week for the sugar. i also have pinched nerves in my back to correspond to some of the spots in my leg, getting an epidural tomorrow, week after next i see a dr who specializes in peripheral neuropathy and als at a research center, hope fully this will be enough to settle my nerves.concidering i have been diagnose with sensimotor neuropathy it would make sense that my muscles will twitch but sometimes i think its my nerves in high gear too. i am sorry for your genetic flaw with the neuropathy, would any kind of stem cell help? where are you located, are their good research centers around you. i really hate dr google

    ---------- Post added at 10:42 ---------- Previous post was at 10:38 ----------

    oh and you are most likely right that i fixate to avoid looking at the things i need too, bad habit of most people, lol. you don't have to be gentle sometimes i need a smack on the side of my head lol

  4. #4
    Join Date
    Feb 2017

    Re: Als and my fear

    I don't think stem cells are ready yet for CMT. I am near a research center though and will definitely participate in clinical trials if i can.

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