danelle Posted March 7, 2005 Report Share Posted March 7, 2005 Hi, I need to go back to a dr who specializes in POTS and my appt with Dr Grubb was cancelled last month because of his illness. I probably couldn't have made it that far anyway.-12 hrsI have seen a dr in charleston at MUSC-Dr marcus wharton who is originally from Duke who gave me my POTS dx. I saw him twice. THe only problem with him was being able to get my records and getting any response from him at all-but he was/is a great dr. I haven't been to vanderbilt but they are about the same distance(nashville is about 40 minutes farther for me-6 hours.I am doing this to help my disability case. I want them to have more info for my hearing whenever that may come up. They told me it would be 13-18 months.Which do you all recommend? I know that Dr Wharton is somewhat familiar with me but I have heard such great things about vanderbilt-just not quite sure what to do. Danelle Quote Link to comment Share on other sites More sharing options...
morgan617 Posted March 7, 2005 Report Share Posted March 7, 2005 Dannelle, I'm not sure what to tell you. Vanderbilt got all my records , twice, told me they'd be setting me up asap, and then ten days later I got a form letter saying I didn't meet their criteria. They did not explain this. Like how I didn't meet it or anything. So I have no idea. I also sent all my records to Mayo and got a letter saying my doctor should be able to take care of my cfs! I don't think it was even listed anywhere. The cardio docs won't see me because I've had ablation and they say that's all they can do. Right now I am waiting to hear from NIH, but am not holding my breath on that one either. So you can see, i really can't help. I know a lot of people on this site have been all over the east coast to various places , all with mixed results. Some really liked Vandy and some really didn't. If the doctor you saw is not very responsive, I don't think it will will help your case much. All the doctors have to agree you are "quite disabled" and I think even sometimes that's not enough. I think the only reason I got accepted is because my meneires is so bad, so it didn't have anything to do with my pots. But they don't explain why they accept you either. So I don't know much of anything, as you can see. Except you've got to have doctors on board with you. I also have clinical depression, so that's a criteria for getting accepted. My therapist was very thorough in her reports to my doctor. Who wouldn't be??? Depressed I mean. I hope you get more insight from others. morgan Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted March 7, 2005 Report Share Posted March 7, 2005 Danelle, I am sorry that I don't know about either place. In your position I would be doing a lot of phone work and try speaking with someone who can confirm that the doctor you will ultimate see is the right one for you! best regards, tearose Quote Link to comment Share on other sites More sharing options...
yogini Posted March 7, 2005 Report Share Posted March 7, 2005 danelle,i don't know much about these doctors either. and because many of us have different experiences with the same doctor that it's hard to know until you actually get there. given that you haven't been feeling that well and that your prior doctor hasn't been that responsive, maybe it makes sense to take a risk and try the new doctor? i am always hopeful that a new doctor could suggest some treatments that the old ones didn't think of. and, worst comes to worst, your hearing seems far enough away that you might have time to go back to your old doc if the new one didn't work out.good luck, rita Quote Link to comment Share on other sites More sharing options...
Ernie Posted March 7, 2005 Report Share Posted March 7, 2005 Hi Danelle,I went to Vandderbilt 1,5 years ago and I am still waiting for my report. I was EXTREMELY disappointed with the treatment I got there. I asked them for my report very often and they don't even return phone calls or emails. I heard of other people having the same problem with them also.Before I went there I sent them my 30 page medical file and I came back with nothing different not even one medication different or tweeted. A complete loss of money and time on my part. I won't go back for sure.Ernie Quote Link to comment Share on other sites More sharing options...
BuddyLeesWife Posted March 7, 2005 Report Share Posted March 7, 2005 We were just turned down for a study at Vanderbilt after sending both my husband's and his twin brother's medical files at their request. Again, no explanation, just a sorry but we don't think we can help you with your problems. Quote Link to comment Share on other sites More sharing options...
Ernie Posted March 8, 2005 Report Share Posted March 8, 2005 BuddyLeesWife,I am sorry that your husband and his brother were rejected from the study. I was by Dr Robertson that he is looking for families with dysautonomia. I wonder why he is rejecting so many cases lately? I only know of 2 cases involving twins.Ernie Quote Link to comment Share on other sites More sharing options...
morgan617 Posted March 8, 2005 Report Share Posted March 8, 2005 My doctor has called Dr. Robertson at least a half dozen times and he won't return his calls. I just got rejected today by NIH because the only study they are doing now is for ncs and I don't faint......yet. And it's a study to see if hypnosis, putting your hand in cold water or biofeedback helps. So if any fainters out there want info, I have it. Boy have I had it, I totally give up on ever getting help from any specialists. morgan Quote Link to comment Share on other sites More sharing options...
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