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Going To Find A Specialist


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Okay, well after talking to my GP yesterday I feel much better. He assured me that my TTT wasn't "normal" in the sense that my HR increased by 29 BPM with a 60% incline. That isn't "normal" at all, he said. He apologized for the Cardiologist and TO me for the fact that he hadn't really spoken to her ahead of time and he neglected to send over my EKG readings from the past two weeks!!! :)

So, anyway, I had him come to this site and take a look around (with me in the phone to hear his reaction, of course!!!) He took one look at the symptoms page and said "Geez, they should just put 'Rebecca's Symptoms List' at the top of this thing!!" So, in some weird way that made me feel better!!!

Now for the crappy part.......(isn't there always a crappy part!??!!) He says that he isn't qualified to treat POTS and isn't even sure if there's a doc in the state that is. I've checked on the list here and sure enough, there isn't a doc listed in Colorado (or anywhere near by, really!!).

So, what do I do? I've already spent thousands of dollars having tests done for MG (most of them coming back "normal" - Geez, I hate that word!!) and having the treatments for MG, ie. IVIG treatments and immunosuppressant drugs, steroids, etc. So, basically, I'm broke. My Neuro wanted me to go to Mayo for the "atypical" MG thing (which now I believe has always been POTS!) and Mayo in Arizona "accepted" me and was really anxious to see me, so I had an appt. made for 3 weeks from my acceptance date! Great, right? Wrong. I can't afford to go.

I found, on the Dr. list, a doc in Dallas and I was wondering if anyone had/has seen him. Dang, I forgot to write his name down, but he's the first one on the Texas list (I think) and it says that he's interested in the "Gender specificity" of POTS. Again, I'm not sure that I can afford to go to Dallas, but I do have family an hour outside of Dallas that might be able to help me, ie. put me up, etc. if I can get down there. I just want to know if he's a good doc and would it be worth the expense to go see him??

I need someone to start treating me for goodness sake. I can't feel this way forever!?!?!?!?

Any suggestions are welcomed!!!

Rebecca

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So, I just called and left voice mails for two docs in Texas (the closest state to me with a specialist). I'll wait and see, I suppose. No choice, obviously.

I mean, what are my options if no one in this state is even willing to DX me, because they don't feel qualifed to do so? I can't even get a script at this rate??!!!

Luckily, I do have the Mestinon, which does help, but it's only a small amount of help in the grand scheme of things. I suppose that that's better than nothing, right?

I've been doing the high salt thing along with the Mestinon and the IVIG and it does seem to help. Although, I'm quite swollen all the time. Any cure for that??

Rebecca

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I don't have any suggestions for your area or Texas but if you are going to make all the effort to go there. Might it be worth going to see one of the top docs? Like Dr. Grubb in Toledo? Just a suggestion. If you decide to go see a doc in Texas make sure you talk to the staff a lot first to make sure they will be able to help you. It'd be really disappointing if you mention POTS and the doctor looks at you if you have two heads. (I've had something like this happen to me.) So thoroughly quiz and ask as many questions as possible, especially since you are traveling!

I know it is probably a bummer that your doctor can't treat you but it was definitely the professional route for him to take by letting you know that he isn't qualified to treat you. I had a cardiologist who would never recommend me to anyone else and yet she didn't have a clue what to do with me. Finally I got frustrated and went hunting myself for a new cardiologist.

Just another thought, you might just want to call around to local cardiologist or neurologist (I'm not sure what your chief complaints are) and see if anyone treats is familiar with POTS. I'm not sure where you are in Colorado but there are some big cities there that should have someone that has heard of it.

Good luck to you!

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I keep hearing about how wonderful Dr. Grubb is and I would love to see him, however, the problem becomes expense. I have family in Texas (and North Carolina) that I could stay with and I could just drive from here to Dallas or get a cheap flight from Denver to Dallas. That isn't true about Ohio. I have two small children that I'd have to bring with me, as it's summer and they're out of school and I'm their care provider. So, it becomes quite expensive to fly three people to Ohio.

Does Dr. Grubb do anything like mabye over the weekend (for special cases like me who need the weekend, so my hubby can watch the kids)? Or maybe does anyone know of a place that I could stay for super cheap?

I know that many of you have traveled many states to see Dr. Grubb and I know that y'all are aware of the importance of a good doc and just what he IS or is NOT willing to do for us. Maybe, if some of y'all could private message me and tell me your Dr. Grubb stories, it would be amazing.

Rebecca

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Rebecca,

My internist knew nothing about POTS but soon became a quasi-expert when she found herself in the position of having to treat me when my POTs doctor gave up patient care.She read articles by Dr. Grubb and Dr. Grubb. She was willing to try the meds suggested in those articles.

The problem with POTS is that no body has the one size fits all on how to treat POTS. It seems like your doctor is willing to read the POTSPLACE information. Perhaps you could share with him Dr. Grubb's most recent article in which he lists various treatments.

Could you try another cardiologist? I found that my general cardiologist also has a general understanding of POTS. He understood the problems and the symptoms. After he read the Dr. Grubb article, he could see why procrit may be of use and prescribed it for me.

I don't think it is right for a doctor to see I do not know anything about POTS and then be able to refer you to someone who knows more than he does.

Just some thoughts.

Lois

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