Another Great Doctors Visit

[Dizzy Dame]

I had an appointment with a new neurologist in Columbia MD who really knows what he's doing when it comes to POTS. We went over my (now antiquated) Vanderbilt results, and also talked about my recent lyme diagnosis. He's doing some pretty interesting research right now with cortisol levels, and has been working with Vanderbilt on other autonomic research.

It was so refreshing to talk with a doctor who knows about POTS, who doesn't second-guess my diganosis or symptoms. He was also just very nice, and open-minded about the lyme diagnosis. He says that there's no literature linking POTS to lyme disease, so he's very curious to see how I do on antibiotics, because I'll be one of the first he's seen with both diagnoses. He's also willing to communicate with my lyme doctor so they can both make desicions about my treatment plan, as it's quickly getting complicated with all the new medications.

Anyway, I just wanted to write about my positive experience. There are good doctors out there, even if they're uncommon. I don't feel comfortable listing his name here on the forum, but if you're from DC or Baltimore and are looking for a good POTS doc, PM me and I can give you his information.

[AJVDK]

Dizzy,

I am glad to hear about yout appointment! I am glad you found a great doctor, plus he will to work with the LLMD thats great!

Amy

[friday]

I had an appointment with a new neurologist in Columbia MD who really knows what he's doing when it comes to POTS. We went over my (now antiquated) Vanderbilt results, and also talked about my recent lyme diagnosis. He's doing some pretty interesting research right now with cortisol levels, and has been working with Vanderbilt on other autonomic research.

It was so refreshing to talk with a doctor who knows about POTS, who doesn't second-guess my diganosis or symptoms. He was also just very nice, and open-minded about the lyme diagnosis. He says that there's no literature linking POTS to lyme disease, so he's very curious to see how I do on antibiotics, because I'll be one of the first he's seen with both diagnoses. He's also willing to communicate with my lyme doctor so they can both make desicions about my treatment plan, as it's quickly getting complicated with all the new medications.

Anyway, I just wanted to write about my positive experience. There are good doctors out there, even if they're uncommon. I don't feel comfortable listing his name here on the forum, but if you're from DC or Baltimore and are looking for a good POTS doc, PM me and I can give you his information.

NIce to hear. I am glad you have a good doc. They're so hard to come by. I recently started seing a Gyno who is just great. it's such a wonderful thing when doctors treat you with respect and understanding. Unfortunately I don't have anyone that treat me for POTS like this, but it's still nice to have a doctor who listens.

babu

[friday]

Anyway, I just wanted to write about my positive experience. There are good doctors out there, even if they're uncommon. I don't feel comfortable listing his name here on the forum, but if you're from DC or Baltimore and are looking for a good POTS doc, PM me and I can give you his information.

I forgot to ask. Is he doing something for your nuerological symptoms?

I saw a neuro because of all of my symptoms, but since he had never heard of POTS and didn't find anything he was looking for, he thought I was fne. Real waste of time.

I would like to try a Neuro again just to see if they have any way of dealing with these symptoms.

I'm often bothered by vision problems. My eyes were checked and they're fine as far as th eye doctor is concernecd, but my problems are, more like sensitivity to light and patterns, and it's heard for me to read for long periods without geting sick. The worst times are when I can't drive because the light between the passing trees makes a pattern and makes me sick. Or if I have to sit in a white room with certain lights. the walls will strobe!

Also the Brain fog I have, and memroy problem drives me nuts. I also get numbness and tingling in the hands and feet. And bunring ocassionally.

As far as I read, these symptoms are common for nuerological problems. I would like to see if I could actually get a doctor that would treat me based on my symptoms. I thought there might be some kind of excersizes that might help. Like I used to see this doc when I was ltttle, who gave me eye excersizes to do to help my vision. I had an unusual focusing problem then.

I was just wondering if your doc does things like that?

I'm thinking thre might be things i could do for my memory as well. Unfotunately most of the docs I see are very conventional. (I'm on Medicaid so that limits who I can see) they want me to have a disease they have expierience in and if I dont' then they dont want to see me.

Babu

[lthomas521]

Cortisol levels and POTS? Has he published anything on it?

[Sunfish]

glad to hear you had (another) good appointment. i'm guessing you may have seen one of my former doctors (when i lived in baltimore) as he was working with an endo then regarding issues with cortisol levels & one of his offices in in columbia. several of us on the board have actually had discussions about the cortisol testing we've had done with the endo he works with (if it is indeed the same doc).

great to hear that he's open to working with other docs as well.

melissa

[Dizzy Dame]

Friday,

My doctor is treating my symptoms. Right now we're waiting to see how I do on antibiotics, then we're going to do some tests to see if I would benefit from a new treatment for POTS. He's definitley concerned with improving my life, but also really looking into the mechanisms of my POTS, as each person is different.

Ithomas,

I'm not sure if he's published. I'll learn more about the cortisol levels on my next visit and can ask him. There was so much going on today that we only briefly talked about his research.

Sunfish,

I'm sure it's the same doctor. How was your experience with the tests? Did you get any help from having them?

[Sunfish]

hello again -

i've rambled extensively already about my testing, results, treatment, etc. in regard to the cortisol so i'm posting the links to the discussions that they're contained in.

http://dinet.ipbhost.com/index.php?showtop...amp;hl=cortisol

http://dinet.ipbhost.com/index.php?showtop...amp;hl=cortisol

http://dinet.ipbhost.com/index.php?showtop...amp;hl=cortisol

http://dinet.ipbhost.com/index.php?showtop...amp;hl=cortisol

http://dinet.ipbhost.com/index.php?showtop...amp;hl=cortisol

if you do end up going to the same endo for testing in baltimore, you'll be a block from one of my old apartments right across from hopkins

in terms of whether i was helped at all, i did learn something else about something that's not quite right in my body and that isn't a bad thing to know in terms of medical procedures, surgeries, etc. but aside from that i haven't benefited at all in terms of my day-to-day health/symptoms. i took the cortisol for about 7 months and then weaned off it with no difference (either when i started or stopped it). but do keep in mind that i am NOT the norm in terms of my progression of illness. i'm a lot more ill now than when i had the testing & POTS is no longer my diagnosis. so while i know we're all different i'm very much out of the "norm" and not the best person to measure things by.

hope this helps,

melissa

p.s. regarding any research, if it has been done it's only been in the past year. prior to that i know anything that was being looked into wasn't "official" research. of course that doesn't mean it hasn't happened or won't be happening.