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Thread: Welcome Hixie

  1. #1
    Distinguished Community Member
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    Default Welcome Hixie

    Hi Hixie, We are the first with MG to post on the new BT. I'm looking forward to having someone to compare notes with. I've been having infusions of IVIG since June when I had 5 days straight then 3 days a month for 4 months and now I will be getting only 1 day in November, December, and January. Are you getting infusions? I also tried to take Mestinon but had trouble with all 3 differents brands. Tell me your story.

    Gabriella
    Progressive/Relapsing MS, Myasthenia Gravis, Spinal Stenosis, Degenerative Disc Disease, Diabetes, Hypertension, Hashimoto's Thyroiditis
    Advocate for ADA, Artist's Community for Change, ADAPT, Universal Living in Place, HopeKeepers, Complementary and Alternative Medicine

    "Life is mostly froth and bubble, two things stand like stone. Kindness in another's trouble, Courage in your own"........Adam Lindsay Gordon

  2. #2
    New Community Member
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    Oct 2011
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    Oklahoma
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    Default I am here!

    No down arrow! I had to change some kind of view. Had a choice of 3, don't remember what. Finally found down arrow and got a list and pointed at Myasthenia! As I said, this site is not very user friendly.

    I have not had infusions. Had Pyridostigmine, (Mestinon), for 3 years with diarrhea, and then just went to my personal Dr. and he weaned me off of it but still prescribes it for me to soften stool. Hope it also helps a little with MG. He would not be able to prescribe the infusion. Have to go back to a neurologist. I went to another but he did not really do anything, just keep on with what I was doing. Guess I will try him again.

    Tell me about the infusion. I think a nurse has to come to give it to the other resident who has MG but we only pass in the dining room and do not chat. What does it involve, and how long does it take? It evidently helps her. She walks fine!

    Just got computer working. It was out this morning. Our Retirement village is in the process of changing over to wireless. Went for a long time getting phones to work. They are down to only a few complaints, so are now going to hook up TV. They were probably monkeying with the wiring.

    See you tomorrow?

  3. #3
    Distinguished Community Member
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    Default Welcome

    Hello again, So glad you finally found your way. I have been posting on BT for about 10 years and it is so big it is hard to find your way around. My primary diagnosis is multiple sclerosis and only was tested while in the hospital back in April for MG. The test came back positive. The infusions will help both the MS and the MG. I get an IVIG infusion once a month and it takes 4 hours to infuse with a slow drip. My husband drives me to a hospital outpatient infusion center as I am prone to allergic reactions from medications. Overwise I could get it at home if Medicare would pay for it.

    It is a very expensive treatment costing $13,000 a day at the center but Medicare and my secondary insurance (GEHA) cover the cost. You should ask your neurologist about getting it in the retirement home where you live or at an outpatient facility. It is the only treatment for MG that I can tolerate. The Mestinon caused me to salivate to the extreme and I thought I was going to choke to death. My neuro has only treated 2 other patients with MG as he is primarily a MS specialist. It is a rare disease so I can't find any doctors here who specialize in it and it is probably because of having so few patients with it.

    Blessings,
    Gabriella:angel:
    Last edited by Gabriella7; 10-31-2011 at 09:05 AM.
    Progressive/Relapsing MS, Myasthenia Gravis, Spinal Stenosis, Degenerative Disc Disease, Diabetes, Hypertension, Hashimoto's Thyroiditis
    Advocate for ADA, Artist's Community for Change, ADAPT, Universal Living in Place, HopeKeepers, Complementary and Alternative Medicine

    "Life is mostly froth and bubble, two things stand like stone. Kindness in another's trouble, Courage in your own"........Adam Lindsay Gordon

  4. #4
    New Community Member
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    Oklahoma
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    Default

    Finally found my way back. Took 2 days!
    I have finally worked my way back to 4 pills of Pyridostigmine, (generic for Mestinon) which is what the first neurologist prescribed. He is quite familiar with MG but I didn't particularly like him. I'll stick with the new amount of pills for a few days to see what it does for me. I think I took the fourth pill only a couple of days before I quit them. I think that my double vision lessened, but I had already decided to stop them. One symptom of MG was listed as asthma, and that is a bad problem for me. I have to go on prednisone about every 6 weeks. Boy, I love that. Feel great for that 10 days! Even stronger so I can stand up straight while I push my walker around. I really should pin down the other resident with MG to talk about the infusion she had. I heard that a nurse had to come here to treat her, to give the infusion, I guess.
    Time to go take my 4th pill and get to bed. Look for you again. Hopefully I can get back in more quickly next time.
    Last edited by Hixie; 10-31-2011 at 07:13 PM.

  5. #5
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    Default

    Hi Hixie, Glad you found your way back. BT is such a large site, it is hard to manage. I plan on asking my neuro about the Mestinon as I understand it is what will improve my strength. I sleep a lot and need a lot of sleep. It may be the combination of diseases but I ususally sleep 12 hours with a 2 hour nap in the afternoon.

    Nice to have a friend to chat with as I know no one else with MG.

    Blessings,
    Gabriella:angel:
    Progressive/Relapsing MS, Myasthenia Gravis, Spinal Stenosis, Degenerative Disc Disease, Diabetes, Hypertension, Hashimoto's Thyroiditis
    Advocate for ADA, Artist's Community for Change, ADAPT, Universal Living in Place, HopeKeepers, Complementary and Alternative Medicine

    "Life is mostly froth and bubble, two things stand like stone. Kindness in another's trouble, Courage in your own"........Adam Lindsay Gordon

  6. #6
    New Community Member
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    Oklahoma
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    Default

    Hi, Gabriella, Took me a long time to get back in again.
    I cannot think of scheduling infusion until January because I just fell into the hole and Medicare will not pay for it. The cost of some of my asthma drugs has doubled. The MG drug is still less and I think it is helping my asthma so I am aiming for 4 pills a day. Hope I can get through till January with what I have on hand.

  7. #7
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    Default

    Hi Hixie,
    I went to my neuro last week and he has decided to stop the infusions for a while. He didn't say why and I forgot to ask. I have been on them for 6 months and I haven't improved very much so that may be the reason or it could be the cost. He is in and out in about 10 minutes so it is not much of a visit. He test my arm strength and to be truthful my legs are much weaker than my arms but that could be the MS. It is hard to tell what is what with me having so much on my plate.

    He gave me another pill to counteract the side effects (excess saliva and choking) i was getting with the mestinon and it is working so I should be getting stronger. I'm only taking 1/2 of a 15mg pill 2 times a day and I have to call back to speak to the nurse on Monday to let him know how I am doing. Talk soon.......

    Gabriella
    Progressive/Relapsing MS, Myasthenia Gravis, Spinal Stenosis, Degenerative Disc Disease, Diabetes, Hypertension, Hashimoto's Thyroiditis
    Advocate for ADA, Artist's Community for Change, ADAPT, Universal Living in Place, HopeKeepers, Complementary and Alternative Medicine

    "Life is mostly froth and bubble, two things stand like stone. Kindness in another's trouble, Courage in your own"........Adam Lindsay Gordon

  8. #8
    Distinguished Community Member
    Join Date
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    Location
    The South
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    Default

    Hixie, Where have you been? I am now trying the other brand of generic Mestinon and getting diarrhea with each tablet. I am supposed to take 4 a day but have only been able to manage 2 as I have to be near the toilet because of the diarrhea.

    I will be going back to the neuro on January 11th but I am going to try another one after that visit. I can't even get my questions answered between the 3 month visits. This is a major MS Center and I think MS is all they are interested in as the nurses seem to know very little about MG. Hope you answer soon.

    Merry Christmas,
    Gabriella
    Progressive/Relapsing MS, Myasthenia Gravis, Spinal Stenosis, Degenerative Disc Disease, Diabetes, Hypertension, Hashimoto's Thyroiditis
    Advocate for ADA, Artist's Community for Change, ADAPT, Universal Living in Place, HopeKeepers, Complementary and Alternative Medicine

    "Life is mostly froth and bubble, two things stand like stone. Kindness in another's trouble, Courage in your own"........Adam Lindsay Gordon

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