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I want to tell (and ask) you about a doctor

Nicole's Mom

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I didn't know whether to add this to my last post or start another. But then I thought I'd start a new post because it's about a POTS doctor that I didn't find on your list of docs and I didn't know if you might like to add him. Meanwhile I can simultaneously answer your question Michelle.

Michelle, yes thank-you, we do have a neurologist who specializes in disorders of the autonomic nervous system. He's the one who diagnosed Nicole and did the tilt table. We are very lucky to have him so close to us. We can drive to him- about an hour away. He has a small dysautomia clinic. He is smart and knows lots about the illness and has experience on what drugs are good etc. Although his focus is actually on research he does see patients in a clinical capacity (albiet he is not a fully operating clinician like Dr. Grubb). After all we've been through we do feel fortunate to have him- especially when I see through your posts how hard it is to find a specialist.

Nicole sees him periodically and was due to see him a few days ago but could not make the trip because of the trip to the other doctor three Wednesdays ago which was too exerting and caused the relapse within the relapse. We were going to discuss pyrodostigmine which (correct me if I'm wrong) I think is the Mestonin, DDAVD, and Midodrine. The latter two he has already recommended to Nicole. He's very smart and we are looking forward to getting back to see him. Nicole has been considering trying the midodrine when she gets more ambulatory as we all know it isn't good for someone who has to lay down a lot which she is doing right now.

I don't know if it's okay to place his name publicly on this forum without asking him. How do you normally go about such things? Is permission of the doctor required? He seems like someone you might want to add to your doc list. He might be of great benefit to anyone who might want to see him. He is in Boston. Maybe you could advise me how to get his name into circulation.

Another thing about this doctor that is he went out of his way to help us out with another situation. When we brought Nicole home by air ambulance and insurance wouldn't cover it, this doctor wrote a great letter in our behalf to try and help us recover the money from the insurance company. We had tons of evidence that the air ambulance was indeed necessary but insurance said no no no. We hired a lawyer and this doc wrote an excellent, right to the point letter for us and it was of great help. That says something about him. When all was said and done we did get our money back ($18,500 less the lawyer fee).

Now, having said all this about this good Boston doctor I'd like to add that we are always open to receiving names of any doctor who could help us, scarce as they are. Also we live right near Providence, RI. Do any of you live near us?



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Hi Beverly!

We have an "Add A Physician" link on the upper right hand side of this page:

http://www.dinet.org/physicians.htm Once a physician is added we send them a survey to ask if they want to be on the site and to find out what types of dysautonomia they treat, etc. so that we can include it with their listing. I'd love to have this doctor on the list...sounds like he is one of the good ones.

Thanks for thinking of others when you are in the mist of so much yourself right now.


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JLB- Sometimes it takes a while to feel ready to make certain types of phone call when it is a big step. On the other hand it might take a while to get in the door - you know how first appointments can be sometimes- so perhaps you can at least get the date on your calender and while your waiting for that date to come around you can build up your courage about going. Definately let me know how you make out- to start off with what date they give you to come in.

Good luck.


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