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Relapse Over??? Mestinon!

Posted Mar 16 2010 4:55pm
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....
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