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Well, Today's The Big Day!!!!

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I'm headed to the shower and then all the way across town to see my two docs. My Neuro never did call me back, so he might be a bit surprised today when the appointment isn't just with he and I :huh: . Oh well, I tried to communicate with him..........not my fault right? Regardless of fault, I'm worried that he's going to feel ambushed and not want to help me now. That part makes me angry because I really did try (for the past three weeks) to contact him. (I know what y'all are going to say; I need a new doc. He's my third Neuro, though!!!)

I just want to be treated. I just want to feel normal again (or close to it!). I want to be able to work. I want to be able to play with my girls. I want to be able to go out and have fun with my husband. I want my house to be cleaned and my laundry done and not use up every ounce of energy that I have for the whole day, in doing so!!! I want to be able to remembe what I'm doing. I want to be able to work out and lose some weight again. I want to sleep when I'm supposed to sleep and be awake (and alert and energetic) when I'm supposed to be awake. Is that too much to ask???


All I know is that I'm hopeful that they will PX me something for some of these symptoms. I'm bringing in the article from Dr. Grubb, so I'm hopeful that that will help them know where to turn first, etc. Hey, does anyone know if Dr. Grubb would respond to my docs via an email? His email address is listed at the end of the article, so I was going to mention that to my docs as a possible resource (??). I would love to be able to go see, Dr. Grubb, but alas, I can not. I can't afford it and I can't wait until next year (his first opening for a new patient!!).

Sometimes, I dream that I get some sort of funding so that I can go see him. Like from some TV show or something random. I know, I know, it's crazy and dumb, but I can dream, right??

Anyway, wish me luck with the big Docs, today. I didn't sleep last night because my brain wouldn't shut off :) . Now I'm too tired to think straight..........funny how that works, aye?


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Well, I'm back, and I have to say that I'm somewhat impressed and somewhat disappointed. I'm impressed because both doctors worked well together and didn't seem to feel threatened by the other one. They took turns talking and listening.....quite a shock!!!

I'm disappointed because they didn't DO anything other than refer me to a new doc. BUT she apparently has seen three POTS patients before and has spoken to Dr. Grubb on the phone several times. She's the closest thing to a POTS doc we have in these parts (apparently). So, my appointment with her is set for this Thursday at 11:30am.

I've been instructed to keep on my Mestinon and to increase my salt (again) and just wait for Thursday to come!!! My Neuro seemed somewhat relieved to have another option for my DX other than just MG (since I don't fit that mold too well, apparently!! LOL). I was glad that he was glad and everyone seemed to get along nicely.

Both docs, which are in the same building as the "new" doc (oh my!!) are going to forward, my rather huge, files on for review by the new lady. (SIGH)

My PCP did say that the foggy brain thing is perfectly "normal" with POTS and not to worry too much about it. Is that true? Does the fogginess get better with treatment or not so much??? I'm really concerned about that part of the illness. It seems like the one that we have the least control over (not that we can control the physical, but it seems to me that meds will work better on the body, rather than the mind.....).

Anyway, now I get to wait AGAIN!!!!

Thanks for all the nice thoughts, fingers crossed a prayers.......they're all appreciated.


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Your on a great path....keep your chin up and I hope they find something to give you some of that energy your needing. And it's good to dream!!! At least that's what I tell myself. :)


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Glad your headed in the right direction! :)

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Yes, the foggy thinking is common with POTS. As for it getting better, it does resolve for some with treatment, for others it gets a little better, and for still others, it remains a big problem.


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I know it is a good feeling when you finally find a doctor who can treat you. I wish you lots of luck.

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