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Going To See Dr. Grubb Today


Guest Julia59
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Guest Julia59

Today I'm going to see Dr. Grubb. I have a list of things to discuss. I hope to cover it all, and get an idea where I'm at POTS wise. My concern has been that my POTS is goin into PAF. My HR has not been compensating---even though my blood pressure drops to very low levels. Last week I recorder tow BPs, one at 64/45 and the other 69/50---the rest average 70/something---average.

Another problems has been the leg weakness/numbness. I can not walk fast at all, and feel frail. My legs will start to buckle and then I will lose coordination. I'm not sure if it's my myelopathy form my spine issues, or it's the POTS. I still can not find a good neurologist locally who will take any of this seriously----so I'm always bringing this up to Dr. Grubb. I see my PCP on May 4th---and she seems to have a interest in all this, so I may ask her to coordinate some kind of neurological care---but only after she writes a letter telling any future neurologist this stuff is real---and serious.

Another thing we'll discuss is my low HDL cholesterol----I'll ask him---"am I a heart attack waiting to happen"? My triclycerides are high--205----and the LDL is 126. The total is 195. The ratio is bad---and my old PCP put a BIG BAD on the report. I can't take statins. Bev suggested a new drug Omacor---which is a purified form of omega -3. NEW DRUG----?

I'll keep you posted.

Julie :0)

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Guest Julia59

Well folks---no real answers yet. The appointment went well. I discussed how my OI has gotten worse, and how weak I have been, being on the verge of collapse all the time.

He felt the weakness may be due to the spinal issues, and I will follow up with my NSG on that. I want to avoid surgery. Dr. Grubb tested my strength, and it's not bad, so i'm not in an emergency situation. My problem is when I try to lug myself around, just going to the meat market is overwhelming, and when I'm done I can barely make it back to my car. Grocery store is out of the question, and virtually any other shopping. It looks like my catacholamines are in the normal range---which is good news.

I do not have hyper-adrengic POTS---and that is what I suspected. When I have hyperadrengic spells---it comes in cycles--then it's followed by severe fatigue, and OI issues. My BP is running very low, but it's not that way all day. Basically I have POTS with OI, and difficult to control tachycardia, but the tachycardia is not extreme, just low 100s when on my beta blocker.

I need to follow up with NIH on the EDS study to see where I'm at on the waiting list.

I told Dr. Grubb that my EDS feels like it's getting worse. I just think it was always there, but now I'm having more problems with my joints. This is really all stuff he can't do much about. He did not push the issue about trying the new beta blocker--Labetalol. Maybe because he saw my low BPs.

He told me keep moving. I told him I do whenever I can. If I'm having a good day, believe me I try to get a lot done---and that's a lot of moving. But even on bad days I still move---just a lot slower. I never stay in bed----even if all I can do it sit propped up---I do it. I'll read, watch TV---or fold some laundry. I'll find ways to keep moving.

He told me to try the topamax again for pain, so i'm going to give it another whirl. We will try that before the new neurontin--I forgot the name, but it's NOT supposed to cause weight gain. He said the topamax is cheaper, so we will try that first.

I told him that I have to have a colonoscopy, and I am afraid of doing this when my POTS is so bad. He said to take some IV fluids before I do it, and try ativan or valium in my IV sedation instead of the versed mix which made me sick in 2001.

Hopefully the pain will be in better control, and in turn, the fatigue won't be as bad. Unfortunately, if I'm not in a ton of pain the fatigue is still pretty severe.

I'll see him again in 6 1/2 months.

In the meantime, I sitll need to have better enurological care where my spinal issues come into play.

WE'll see what happens---I'm going to e-mail that Doc at NIH. she will answer, she usually does to let me know what is goin on.

Julie :0)

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Hi Julie,

I haven't written for awhile, but I do read your messages. I am so sorry that you are still having such a difficult time. I hope you get some answers soon.

I sailed through my colonscopy a couple of months ago with fentynl and versed. I hope yours goes smoothly. That will be one less worry for you.

Thinking of you . . .

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I do not have hyper-adrengic POTS---and that is what I suspected. When I have hyperadrengic spells---it comes in cycles--then it's followed by severe fatigue, and OI issues. My BP is running very low, but it's not that way all day.

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I'm sorry I'm confused. Are you saying you were misdiagnosed by Dr. Grubb with hyperadrenergic POTS? Because you speak of having that in your past posts? Does he often misdiagnose people? He's been my daughter's doc, and usually seems spot on.

Thanks. sorry if I missed something.

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Guest Julia59

Patricia,

No---Dr. Grubb did not misdiagnose me. Beveraly thought based on my symptoms---and the "hyper-adrengic spells I had that I may have the hyper adrengic form of POTS. We had the catecholamines tested to check and see---and it looks as if I don't have that form of POTS. I just have POTS-----chronic ANS dysfunction.

Dr. Grubb does not misdiagnosed people as a general rule, but I imagine any physician can make mistakes from time to time.

Take Care,

Julie :0)

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