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Most Amazing, Wonderful Doctor Appt In My Life!


KLK1305

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Hi everyone!! It has been a few months since I have been on to post anything, and I now have the greatest thing to talk about. I'm sure many of you understand that it's just frustrating when the only thing you can talk about sometimes is the crappyness you feel, the frustration with doctors who just don't get it, and the wish to just feel normal again.

When I was first diagnosed last summer I met a girl who was also diagnosed with POTS & NCS. She was one of the lucky ones who had been diagnosed very early on, had extremely knowledgeable doctors, and has had a lot of her symptoms managed for the last 5yrs. From September-December were absolutely horrible for me. It was extremely frustrating with my doctors at home who were only willing to try one thing and then give up and who were failing to even try to help me manage my migraines, stomach issues, & the long list of other things I was experiencing. Right before Thanksgiving, my new found friend told me that I needed to see her doctor. Who happend to be Dr. Blair Grubb. I called and was surprised to find that the orginal wait of 6months to a year to see him could actually be less if you go to see Beverly. She is the practitioner who is his right hand woman. I am one of those who is more than willing to see anyone, I could careless about the degree as long as they can help me and was more than happy to schedule an appointment with her. My appointment was yesterday.

It was the most phenomenal, amazing, wonderful doctor visit I have had in the last ten years!!!! Words truly cannot describe the experience. Beverly is one of the kindest, most understanding healthcare providers I have ever met (and boy have I met alot). I was with her roughly two hours. I cannot explain how amazing it was to have a doctor tell me what I had and what I was experiencing. It wasn't me repeating I have this, this and that and have a dumbfounded look. SHE WAS TELLING ME!!! She went through a powerpoint and showed how things work, how they don't, and the ways to begin to try to manage it. I am one of those who have every single symptom imagineable (yay me! I like to say I am an overachiever lol) and when she shows the 14 main things that are accompanied with a POTS, NCS diagnosis, I present all 14 things. I cannot express the way it made me feel to have a doctor validate what I have been saying all along. And to be told I am not crazy or imagining things. They actually understand that it's not just heart rate and blood pressure. They get that it is a complete attack on the autonomic nervous system and that it affects everything in and around the hypothalamus. WHAT A BLESSING!!!!

If you are able to travel to University of Toledo to go to their office I URGE you to do it!! They have the most amazing understanding of this and have studies and knowledge to prove it. They have such a compassion. She truly is sympathtic/empathetic to those like us.

So in the last 24 hours, I have had the greatest experience..Was also diagnosed with Ehlers-Danlos (I always thought my flexible and contorting ways were just normal lol) which explains alot about why some of us are diagnosed with NCS..Was given a whole new round of meds (welbutrin, propranolol that I am starting this morning and hope that in the 5-6wks to come once I am weened off what I am on and fully on these new meds may help provide the much needed change I need to get my body going again)..And I have a great renowned hope that I am finally in the right hands. My next appt is with both Bev and Dr. Grubb in March.

So with that, if you are able to go there DO IT!! Get your doctor to refer you and send your info. Call at the first of the month (on the 1st) and try to schedule an appointment. YOU WILL NOT REGRET IT!!!

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Thanks for posting this, and congrats for finding this wonderful doctor!

I'd love to hear of any changes they've recommended to your regime and/or meds. Apologies if that's nosy - just trying to learn everything I can (I'm in the UK and thus far my GP hasn't referred me to anyone who's a specialist in this area). I used to take Wellbutrin, but that was during healthier days - wondering if I should try it again.

Best of luck to you with the new meds. Thanks again for posting this information.

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I am so happy for you. I also love my doctor. Too many are CLUELESS and not interested in learning anything. I hope you have wonderful luck with what he helps you with.

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In my experience, both Beverly and Dr. Grubb himself are some of the most compassionate, knowledgeable, and truly KIND doctors I have ever known. That being said, however, I have had no small amount of frustration with trying to get feedback out of their office when I am in crisis. (In the hospital, etc.) I am not angry, I know that they have an enormous patient load, and Dr. Grubb has a very difficult personal situation which greatly limits his schedule. It is just frustrating to have such a hard time getting a response when things go to heck in a handbasket! That being said, I would definitely recommed ant POTSy person have at least a consultation with them, if at all possible. My understanding of what was happening to me was infinitely improved as a result of seeing them both!

Sandy

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  • 2 weeks later...

hi..

I have so fare only heard good things about grubb. I so whant to be abel to gett an appointment whit him some day. So fare its pretty close to impossible. Since i live in europe and my cardio has band me from flying so fare. But I have my own secret plan, well not so sercret since i tell u but still=)). First of all i have to gett my perment dissabilty welfare thing. Rigth now I am not alwaod to leave the contry for longer periods. My plan is to take a cruise over the atlantic and then one back again. The ting is that is min a 3 mnth stay in the usa.

But rigth now its my best hope. I am so glad to hear about someones productive and nice doc appontment. To day of all really. Cause today I have hit the wall again. Sick of being sick and only getting the brush of by docs.

I did gett tested for mastocytiosis. It was negative. When i tryed to mention mcad the doc gave my the crazy look. I live in a contry where we are supposed to have the best health care. We dont, the docs are very conservative and since a small contry well few docs too.

Like I have mentioned to several docs that allergy meds gave me the abilitey to feel burns etc. I have gott newly boild water on my legg, and i didnt feel it, other that it was weath. The docs dont belive me.

The doc yesterday said well you have been to a neroligist. Well yes, but the nero ust weiwd my old mr and said i was all fine. I would love to have here x-ray vision..

Sorry not didnt meen to start ranting. I really ust whanted to say it so very nice to hear that there are disent docs in the world. even though its on the other side of the bigg pond.....

Love to hear about your visit whit dr grubb himself....=)

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