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Dr. Recommendations


Darlene
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Can anyone suggest a good Dr. I know I have something else going on other than POTS, maybe something that is causing the POTS, anyway, not getting any answers from my cardiologist, neurologist, or family Dr. I want a Dr. who will check me for everything, lyme, thyroid, sugar, wilson's. I've been sick for 4 years now, and I have had just about all I can take, and don't want to be one of them people on medical mysteries that have to go through 100 Dr's until I find the one that finds out what is wrong with me. And yes I have already been to Grubb.

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Darlene,

I wish I could help you with the name of a good doctor, but I'm having trouble myself. I remember you telling me about those brain lesions, and I still think this needs to be investigated more. I live in the same area you do, and I have not found a decent neurologist, or PCP. The neurologist I have now has a decent bed side manner, but she still doesn't connect the symptoms to my spine instability.

Would you be willing to travel? I have a great EDs doc in Cincinnati, and orthopedic surgeon, but the orthopedic surgeon is leaving the practice. I'm going to see if my EDS doctor has any suggestions. Have you gone to the Cleveland Clinic?

HUGS,

Maxine :0)

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Guest Sandy Sims

Boy do I hear you!!!

For me it was two years of non-stop traveling to see "special" docs and no help!!!

I saw them all too!!

And deep down inside I also KNEW there was something wrong--and it was getting worse!

But, again, the answer for me turned out not to be something odd--and a glucose tolerance test WITH INSULIN levels got it. Any GP will run this test if you have dizzy spells when you are far from a meal--esp if there is diabetes in your family. The likelyhood of this is TONS more than any of the odd stuff.

Problem is, my fasting glucose levels tests they run often are normal--or close--on tons of tests. Adrenal surge forced glucose up to save my brain--despite my sugar problem==but made me VERY sick doing it! This is how it will be until you GET diabetes--then it's too late!

So unless I TOLD them I got sick from eating--and worse early AM when I hadn't eaten in a while--this simple test wouldn't have been done.

Party this was MY fault--I complained of low BP=--high pulse--chest pains--dizzy--swollen tummy--headaches--blurred vision--ears ringing--nausea--constant infections of all sorts--vitamin deficencies--waking up at night shaking and sweating--lots of stuff --but didn't mention I got sick when I didn't eat--and fell asleep after I did eat. That part seemed less important to me than constant nausea and the inability to walk without passing out! Was just a fluke that I mentioned waking up almost EXACTLY 4 hours into sleep nightly sweating and disoriented to a doctor who WAS hypglycemic and he picked up on it.

Don't wait for a similar miracle--get tested!

Google reactive hypoglycemia and it will all make sense!

Hope this helps.

XOXOX

Sandy

Can anyone suggest a good Dr. I know I have something else going on other than POTS, maybe something that is causing the POTS, anyway, not getting any answers from my cardiologist, neurologist, or family Dr. I want a Dr. who will check me for everything, lyme, thyroid, sugar, wilson's. I've been sick for 4 years now, and I have had just about all I can take, and don't want to be one of them people on medical mysteries that have to go through 100 Dr's until I find the one that finds out what is wrong with me. And yes I have already been to Grubb.
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hi darlene -

am i right in picking up that you're in ohio? are you looking for a PCP to coordinate/ take charge or a specialist? (or whichever works?) over the years i've seen a plethera of docs in northern ohio, both east (cleveland area) & west (toledo area, where i live now) & while i would certainly not recommend all of them i have a number that i've had good experiences with & would feel confident recommending depending on the need. if you are in ohio, particularly NW or NE, send me a PM or email & i'll try to help out in any way that i can. i will be straight with you though that some of my best docs won't go on an endless search for answers if they feel there's nothing to be found. i don't know enough about your specific situation to know how much digging has been done but there's a point wherein accepting reality & managing the symptoms is the best case scenario and, at least in my opinion, having a doctor willing to walk through this scenario is just as valuable (if not more so) than one who is willing/ able to run tests until the cows come home. this may or may not be where you are but i just wouldn't want to recommend docs to you with the impression that they will necessarily run endless tests if they feel there is no reason to do so.

hang in there,

:D melissa

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Hi,

I wish you luck on trying to find a dr. that will help you find some answers! It is not easy! :blink: I am familiar with Central Ohio, and have some good neurologists, but I don't think that is really what you are looking for? Let me know if you find a helpful dr. I need someone as well to help on the endocrine and specialty neurologist that deals with other causes of POTS than EDS and neuropathy.

Hope you find someone! :)

P.S. Sunfish (Melisssa) if you know a dr that may be helpful Endo or dysautonomia specialty neurologist wise in OH let me know! :)

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