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Thread: scared

  1. #1
    New Community Member
    Join Date
    Mar 2013

    Default scared

    [just found out through a blood test that I have MG. Braintalk forums helped me so much when my husband was dying from ALS. Who knew, but the dear Lord, that I would need help again. I do not know where to start, so will post this and keep checking for replies. I have forgotten really how to properly use this forum, so bear with me.

    Actually, I was not fearful of having MG because my brother has been battling this for several years; I did not think it was genetic. So far, the medicine has affected me adversely, my muscles just go weak all over. I return to the neurologiist next month. Have had. MRI, Cat Scan, and swallowing tests. My right eye has moved upward, and I cannot see properly. That is what prompted my eye doctor to have the blood test.

    I just know that I am scared and totally in the dark. Help.

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  3. #2
    Distinguished Community Member
    Join Date
    Oct 2006
    Red Sox Nation :D


    Hello jenmae and welcome back to BT. I am sorry to hear of your MG diagnosis.

    The MG forum is not populated right now but others may come around. I am from the Multiple Sclerosis (another autoimmune disease) forum. We have had a member w MG and MS. Many of our symtoms overlap. Fatigue for one.

    We will be glad to support you any way we can,

    Edited to suggest the Emotional Support forum also.
    Last edited by stillstANNding; 06-06-2017 at 01:07 PM.
    There comes a time when silence is betrayal.- MLK

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  5. #3
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Oct 2006
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    ((((((jenmae)))))) ~


    I'm so very sorry that you lost your husband to ALS, and that you've been diagnosed with MG. As ANN mentioned, this forum doesn't get a lot of traffic, but there are still plenty of folks here, who will listen and provide you with whatever suggestions or ideas we may have from our own experiences.

    Have you informed your neuro about your reaction to the medication? You might need to change meds or alter the dose. It's worth a call to your neuro, before you appointment next month, so that you don't have to continue suffering these side effects.

    Here's the link to the MS forum:

    Here's the link to the Emotional Support forum:

    Healing thoughts and prayers on the way for you ~

    Love & Light,

    Mom to Jon, 49, and Michael, 32, who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

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  7. #4
    Distinguished Community Member
    Join Date
    Oct 2006


    Hi Jenmae!

    I'm a 19 year survivor of MG. I've done tons of treatments over the years, and will be here for you. How can I help?

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  9. #5
    Distinguished Community Member agate's Avatar
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    Oct 2006
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    Hi jenmae,
    I'm so sorry you lost your husband to ALS--and that now you have MG to contend with. I'm usually at the MS board but would like to welcome you back to BrainTalk.

    I agree with stillstANNding that it might be time to explore some other options if the medicine you've been given isn't going well. There seem to be quite a few possibilities but each one has its drawbacks, of course:
    MS, diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatiramer acetate (generic Copaxone) since December 2020.

    "A person with multiple sclerosis walks into a bar ... and a table, and a chair, and a wall."

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