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Amyotrophic Lateral Sclerosis (ALS) Message Board

  • Update ...

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    Old 07-25-2015, 12:35 PM   #1
    TimAlley
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    Update ...

    For those of u that have seen my previous post wanted to give u quick update.

    I am still having fasciculations and cramping (muscle spasms to be more accurate probably).

    The cramping is in legs and arms. Pretty much continuously. They vary in severity. My ankles are very tight.

    At this point really no more tests to be done for now. I am on Gabapentin which has eliminated the running ants and most of burning in the ankles.

    My neurologist (w much ALS experience) pretty much said w the really clean EMG/NCV and no clinical signs at all that just not gonna be ALS. She worked in ALS clinic w leading ALS Dr. in Houston so gonna put faith in her.

    Just so weird to mave constant cramping. She said related to nerves but that there may be no dx.

    This may be my new normal.

    Will post if anything changes,

    Thanks,

    James

     
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    Old 08-04-2015, 11:58 AM   #2
    Olifants
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    Re: Update ...

    Quote:
    Originally Posted by TimAlley View Post
    For those of u that have seen my previous post wanted to give u quick update.

    I am still having fasciculations and cramping (muscle spasms to be more accurate probably).

    The cramping is in legs and arms. Pretty much continuously. They vary in severity. My ankles are very tight.

    At this point really no more tests to be done for now. I am on Gabapentin which has eliminated the running ants and most of burning in the ankles.

    My neurologist (w much ALS experience) pretty much said w the really clean EMG/NCV and no clinical signs at all that just not gonna be ALS. She worked in ALS clinic w leading ALS Dr. in Houston so gonna put faith in her.

    Just so weird to mave constant cramping. She said related to nerves but that there may be no dx.

    This may be my new normal.

    Will post if anything changes,

    Thanks,

    James


    James
    Hope you are getting better
    Olifants

     
    Old 09-17-2015, 08:56 AM   #3
    VHDud78
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    Re: Update ...

    Tim-You need to look into your diet. Did your neuro even bother checking blood? b12, D? Go on a juice fast for a week. Only green veggies, pineapples, and blueberries. All anti inflammatories. Try that for a week or two and see how you feel. You could be allergic to dairy or gluten. I would suggest your neuro take blood and I would go to a clinic and get tested for food allergies.

     
    Old 09-17-2015, 10:35 PM   #4
    TimAlley
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    Re: Update ...

    thanks for reply VH.

    She did bloodwork on top of GP bloodwork.

    May give it a try at this stage. What are your symptoms?

    Thanks,

    James

     
    Old 09-18-2015, 09:54 AM   #5
    VHDud78
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    Re: Update ...

    You have to try ..that's one of the things it could be. I'm having issues with muscle stiffness. Legs, back, neck. A lot of tingling. I've had MRI's out the butt and nothing. I'm trying gluten/dairy free. I can't say I've been 100% gluten free (This day and age..it's hard. There's gluten in spices and sauces). I've seen some improvement along with chiropractic treatments. Make sure you get that food allergy test. I'm still waiting to get my results for mine. Focus on eating a lot of sweet potatoes and blueberries and greens. Eat nothing but those if you have to.

     
    Old 09-18-2015, 09:56 AM   #6
    VHDud78
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    Re: Update ...

    I've read some miracle stories of people who lived in chronic pain for years (Fibro, rheumatoid arthritis) and turned over to juicing and it changed their life. I've heard miracle stories for the "shakeology" supplement drinks.

     
    Old 10-09-2015, 10:04 AM   #7
    Albertakewl
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    Re: Faciscalations in calfs ... ? Mnd

    Quote:
    Originally Posted by TimAlley View Post
    Forgot to mention I saw a second neurologist. He concurred with first that I had no MND.

    However he did notice my ankle reflexes were nearly absent. I forgot to ask him what does it mean. I read where it is a sign of ALS LMN. Wish i had asked.

    How have you been doing?
    I do believe absent reflexes is a neuropathy of some sort. Brisk reflexes will show up for ala.

     
    Old 10-09-2015, 10:24 AM   #8
    TimAlley
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    Re: Faciscalations in calfs ... ? Mnd

    Yep. The brisk reflexes and Babinski sign would be the worrisome ones I heard.

    Never hear anyone mention the slow reflexes. I have read the same thing, many neuropathies result in diminished reflexes.

     
    Old 10-25-2015, 07:47 PM   #9
    Albertakewl
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    Re: Faciscalations in calfs ... ? Mnd

    Quote:
    Originally Posted by TimAlley View Post
    I appreciate that. If the doctor isnt gonna see you again for 6 months then that is a good sign.

    I knew that my leg twitching nonstop was not good. I could see the way it rolled under the skin was not good, not like a normal twitch.

    Just everything i read and people i talked to and doctors said the EMG would not be normal at first.

    They all said never saw a case w normal EMG at first.

    Still holding out hope. You have any isdues swallowing?

    Good luck,

    James
    James. Do you mean a twitch in the same spot over and over?

     
    Old 10-26-2015, 05:05 AM   #10
    TimAlley
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    Re: Faciscalations in calfs ... ? Mnd

    Yes. Now the activity never stops.

     
    Old 10-26-2015, 05:44 AM   #11
    Albertakewl
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    Re: Faciscalations in calfs ... ? Mnd

    Oh. Weird. So before it was in the same spot as always, but it stopped at times?

     
    Old 10-26-2015, 05:54 AM   #12
    TimAlley
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    Re: Faciscalations in calfs ... ? Mnd

    Yes. It would come and go. Actually last April it started with an occasional twitch. Then they became more frequent. Now basically it does not stop

    I had always heard ALS is nit painful, but every day I wake up and feel like death. It has been brutal since July.

    Still hopeful something else slrhough not looking good.

    Thanks,

    James

     
    Old 10-26-2015, 06:12 AM   #13
    Albertakewl
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    Re: Faciscalations in calfs ... ? Mnd

    Quote:
    Originally Posted by TimAlley View Post
    Yes. It would come and go. Actually last April it started with an occasional twitch. Then they became more frequent. Now basically it does not stop

    I had always heard ALS is nit painful, but every day I wake up and feel like death. It has been brutal since July.

    Still hopeful something else slrhough not looking good.

    Thanks,

    James
    Did the give you the emg results?

     
    Old 10-26-2015, 06:36 AM   #14
    TimAlley
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    Re: Faciscalations in calfs ... ? Mnd

    Quote:
    Originally Posted by Albertakewl View Post
    Did the give you the emg results?
    Yes abnormal. Have to go back in November for another.

    I am one of those rare cases where had a normal EMG just few months ago and now abnormal.

     
    Old 10-26-2015, 07:22 AM   #15
    Albertakewl
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    Re: Faciscalations in calfs ... ? Mnd

    Quote:
    Originally Posted by TimAlley View Post
    Yes abnormal. Have to go back in November for another.

    I am one of those rare cases where had a normal EMG just few months ago and now abnormal.
    Weird. Did tell you what they think it is? And why do you have to wait so long?

     
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