Tuesday, March 16, 2010

Relapse Over??? Mestinon!

I'm almost hesitant to post this but I think my relapse may be over. I seem to be back to baseline for which I'm very grateful. 

Sunday I was able to out for about an hour. My partner drove me to a park nearby and I was able to take in the beauty there. I was struck by how many shades of green there are. It was so beautiful.

Yesterday I had to go back to the podiatrist because of another infection starting in my big toe. He had to cut back the nail and dig underneath the nail because there is some sort of fungus. I think between my poorly functioning immune system and the poor circulation that I may set a record for the most staph infections in the past 2 years. I go back in a week to see what the fungus is and then start on anti-fungal treatments.

I think what has helped is I finally started taking the generic version of Mestinon (Pyridostigmine Bromide) which is typically used to treat Myasthenia Gravis but is also used off label to treat POTS. Mine has been getting worse and I've been having increased episodes of feeling faint so awhile ago my doctor added this along with Midodrine. After reading the side effects of Mestinon I felt leary of taking it but finally decided to after trying to go to the restroom Friday evening and almost fainting again. Luckily I get warning signs so I'm able to take action prior to actually fainting.

So I started the Mestinon at 15mg which is 1/2 the dose recommended by my doctor. I did have side effects on Sunday but then felt well enough to leave the bedroom AND the house which felt like a major feat. Yesterday was also a pretty good day.

Today I'm fatigued but I've had trouble sleeping the past couple nights.

I'm grateful that this medication is helping my POTS symptoms. I hope it continues.

I wanted to thank everyone who responded to my post last week. I felt so much support from all of you and it helped. I don't know what I'd do without my blogging friends and the blogging world. I feel lucky.

I still haven't heard a word from my doctor. I've sent many emails with some getting sent back so I contacted the practice manager to alert her to potential email problems. Boy was she rude! I was so taken aback because my initial conversation with her when I was thinking about becoming a patient there was in such sharp contrast to the one I had last week. I also heard last week from a friend that there are some troubles occurring there along with some major boundary problems so I'm keeping my distance. I've given up on trying to get the rest of the documentation needed for my SSDI ALJ court hearing from my doctor. It's too much stress for me to worry about. My lawyer has also given up. Little do they know they are creating bad impressions with various doctor's, lawyers, and patients down here. I can not and will not recommend them to anyone until some things get cleared up and other things change.


I'm astounded that my doctor still has failed to follow up on ordering the HIDA scan to see if my gallbladder is functioning as well as a couple other crucial medical issues. I'm still having problems with the upper right quadrant pain.


That's it for now....

12 comments:

  1. Hi Terri,

    This is encouraging news indeed. It's really a good sign that despite the continuing foot problem you're still doing better!

    The SSDI is such a nightmare for people (and I take it from our blogging friends it seems to be no different in the U.K.). I was lucky to have put in enough years at the U.C. Davis to be able to get retirement income when I got sick and had to stop working. I deserved disability, but was too sick to go through the process to get it (that's ironic, I'd say) and, as a result left the university with a much lower monthly income than I should have received. When I asked the person in human resources if other people who were sick did this, she said "all the time." But, as I said, I still feel fortunate that I had built up enough retirement income to get by on.

    I'm just so glad that you may have turned a corner.

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  2. hey terri. glad you're feeling a bit better and i really hope the hearing goes well.

    :)

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  3. Terri - How wonderful to have 2 days where you are feeling better! Isn't that so nice!

    It always amazes me how much I notice now when I go outside and look at nature. I often wonder if I would notice the same things if I weren't sick!

    I'm glad you are feeling better. Hoping all only goes up from here!

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  4. hoping the sunshine of late revives your spirits and your body a bit...i am interested to know more about this new thing you are doing...right now, i am trying to go gluten free, a nightmare but hoping it's worthwhile...

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  5. Yah!!!!! keep your fingers and everything else crossed hahaha :)

    It seems like good service is hard to find these days, everywhere from waiters to Dr's, they are all disinterested and crap (wow, that was a huge generalisation LOL, just trying to share some empathy, not condem everyone on the planet)
    xx

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  6. Brilliant news! I'm keeping my fingers crossed that the improvement continues. You take care of yourself now. . .

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  7. I'm glad things keep going so well!!

    Crossing my fingers for you!

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  8. So glad you've found some relief! Feeling better after a relapse is like 40 degree weather after a severe cold spell. It is so heavenly! So much more delicious by comparison. Hope your SSDI problem resolves soon.

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  9. hi teri:
    would love to learn more about the new med...mesitone? OI, NMH are my worst symptoms...can't stand more than a few mins w/out my heart thumping thru my chest.

    so glad you feel back to baseline.

    sorry to hear about doc troubles. hope u can find someone good soon.

    lisa in berkely

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  10. Hey Terri,
    I nomiated YOU for the happiness award. Check out my latest post for details. It's a bit of silly fun that we can all use! xx

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  11. I'm so glad you're feeling better. And that doctor with the disability information really sucks!

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  12. Hi, I too have fibromyalgia, CFS, POTS, TMJ, irritable bowel syndrome, irritable bladder, neuropathic pain, migraines, IgG subset 3 deficiency, joint hypermobility, and probably even more three-letter syndromes (LOL!). In all seriousness, though, in what state do you live, ME/CFS Warrior, and which doctor do you see for your POTS? I'm asking because your experience with the so-called "office manager" sounds remarkably like mine! My doctor's office staff is unbelievably unprofessional, and even hung up on a phlebotomist @ the lab where I was having bloodwork done, which was ordered by that doctor. The lab called there with questions about one of the tests that was ordered, the secretary immediately became rude, and hung up on the lab staff member! Just curious! DizzyLizzy

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