Cleveland Clinic And/or Dr. Grubb Or Bev

[arizona girl]

Those of you who have been to cleveland clinic or Dr. Grubb, since I have to fly to ohio do you think I should try to go to both centers? They both are on my insurance.

Also, since Dr. Grubb doesn't do any testing on the first visit only consult, and I will probably have to fly back if he wants any tests done, do you think it would be okay to see his NP Bev for the first appointment, since you can get in sooner with her, or wait the 6-8 months to see Dr. Grubb?

If I went to cleveland clinic as well, do they do the same kind of testing or come at it from a different point of view then Dr. Grubb? Are there any doctors there that you would recommend? I really need to see someone that recognizes my form of dysautonomia. I don't know other then the syncope what category that is yet. But my symptoms are as follows, if that can help you all give me a more educated recommendation.

I had a Positive TTT causing syncope after extended orthostatic hypertension and tachycardia, the syncope occurred after a sudden spike in heart rate, then an equally rapid drop in bp with hr following. They didn't test any of the hormones, so I haven't had that done yet. The only things I've ruled out are EDS vascular and large fiber neuropathy. The first line tests I had done at Vandy primarily showed hypertension, which is why I think they didn't do the TTT there, sure wished they had. I also sometimes get supine hypotension/brachy during sleep and nite sweats when it happens. Don't get refreshing sleep. Haven't had sleep study done yet.

Also I have PCOS/metabolic syndrome/High insulin-insulin resistance (take your pick, all the same thing just different names. I also have nonactive thyroid nodules and a left adrenal nodule that one acth stim test I had no response, the other two after were normal response. So maybe some underlying adrenal issues. I have perinual cyst in my sacral canal. I also have positive titers for mono, HV66 and cytomegalo viruses.

Thanks guys hope that's enough to help you help me. I really need to get focused back on getting better and not the nightmare I've been going thru, which completely flared up my symptoms and set me back time wise on getting all this figured out. I appreciate your help and all your kind words this last week. Thanks so much. (half smile) Hope I have a big one on my face again real soon.

[ajw4790]

Hi,

If you fly out to Ohio, I guess you could try to visit both locations, but I would say to expect to stay at least 3-4 days. The two are not real close together, and not sure if you would drive back and forth, but would not want to drive that distance and then have an appointment that day myself. If you go to both locations what is your goal or what do you want to accomplish? Dr. Grubb is cardio., so would you go to CC to see a neurologist? I would not go to both to see cardios. at the same time. Because one may want to try one route and the other another route, and you can only do one way at a time, and then for the dr. that you do not do their way you seem non-compliant and like you don't trust them and are likely to damage any possibility if assistance in the future. If you want testing done CC is the way to go, otherwise Dr. Grubb of course is very well versed in this field, and works more from the treatment side of things. If you go to CC ANS neuro. they still may likely do TTT, QSART, etc. testing. So, they do not avoid looking at the cardiovascular system. Normally CC, I think, has the appointment with dr and another day for testing. But, if you travel a distance I think if you talk to the drs nurse that you can get it set up to se the dr. and have testing all in the same day. Results are not immediate though...

I have seen Bev twice, and felt it was worth it to see her, due to the long wait to see Dr. Grubb. Also, I think if you have seen her, they will later try to get you into see Dr. Grubb quicker than if you were a new patient.

I see Dr. Grubb for the first time this week.

I have seen ANS neuro. (Dr. Shields) and Rheumy at CC. And had all the ANS testing done as well.

I know that others have mentioned follow-up from CC cardio. to be a problem. So, depending on what your goal is...

I hope that helps and answers some of your questions!

[arizona girl]

Well yea, wow that helps a lot! I looked at the directions. I live in chandler/phoenix metro area where it can take 30-45min just to get around town, so 2 hour drive not a big deal for me, 4 hours harder to do.

Good point not to see a cardio at both. Will leave the cardio to Grubb. My doc here is also a NP and she said to get in with the NP/Bev first. Your saying the same thing as well, so that answer that question. I'll make the appointment with Bev.

So now what to do at CC. I saw a Dr. Yan Go a neuro at UCLA, called her after the + TTT and she said I needed to see a Neuro/endocrine doc. Would Dr. Shields fit into that category? What did you think of Dr. Shields (he/or/She?)?

I actually feel my high insulin and/or my adrenal nodule is a factor in all this, which crosses endocrine/cardio/gyn specialties. Sadly, at 52 I think the shipped has sailed for me having a child. I do however also have endometriosis and my colon ruptured in august for no apparent reason, perhaps a car accident 9 mos prior contributed or maybe endo on the bowel. I'm still running low grade fevers as well.

Then there is the viral load I've been exposed to + ppd for tb, neg for active disease, cytomeglo and HV66 viruses, and mono. My cardio here said she wonders if these viruses are factor.

Since you've been to CC what is the best way to make your initial approach to them? My doc said she would write what ever letter I need.

So have your visits to these centers helped you with diagnosis and treatment? Oh, I so can't wait to get to the treatment phase. It seems a lot of the treatments are directed more to the patients who have hypotension.

Thanks so much!