One Year Wait!

[Mystery]

Hello everyone.

I just relieved a letter from the neuropathic pain clinic at University of Michigan and I have been put on a one year waiting list. (This is the clinic that my local neurologist referred me to) Even if I waited a year, I fear I would be seen by doctors with little knowledge of dysautonomia or other related conditions.

I am desperate to find a doctor and/or clinic in Michigan (or maybe even further away) familiar with dysautonomia related conditions and I would really appreciate any help in finding one. (The physician list at DINET.org is good but some of the more promising doctors are no longer in practice.)

Thank you everyone!

[SarahA33]

Hi Mystery, have you tried Dr. James Russell in Ann Arbor, MI? I know some previous members from MI end up going to OH at either the Cleveland Clinic or University of Toledo to see Dr. Grubb. Wish I could help more..

Also, could you please e-mail us the names of the physicians that you believe are no longer in practice from the physician list? PhysicianList@dinet.org Thanks in advance!

Take care, Sarah

[statesof]

Also don't be afraid to make other appointments with an autonomic specialists/ doctor that you may be able to see sooner. If you find the help you need, you can always cancel those far off appointments.

[Sylvie33]

I saw your post after just getting off the phone with the receptionist at the Columbia Neurology Institute in NYC (a hike for you!). However, I called because I saw Dr. Louis Weimer listed on this site (I just signed up today) and he apparently is the master of dysautonomia -- including that resulting from toxins/medications, which I think may be part of my story. He can see you in October! It looks like you have an AA referral, which I hope works out for you.

Here's my question, related to yours. I also tried to see if I could talk with Weimer, or a PA or nurse to see if would make sense for me to consult. No go. I found my new neurologist by calling NYU and speaking with their top guy (who called me twice!) and who referred me to his colleague. He (Dr. Robert Charlson at NYU) talked with me for about 40 minutes before our first appointment and has called me twice since. I am so heartened by his concern. Yet he specializes in MS -- what to do?

I meet for the second time with Charlson Thursday and will ask his advice. However, I am weighing empathy and accessibility with specialization. I would welcome anyone's insight on this.

Meanwhile, today and yesterday were the first time I could sit at my desk and type in four months! Thank you Dinet!

--Sylvie

[rubytuesday]

I see Dr. Grubb at the University of Toledo. He specializes in Dysautonomia among other heart conditions. I was referred to him by my cardiologist in SW Ohio. It is a hard 5 hour drive for us and he, too, had a year long wait list. At the time, summer was fast approaching. It was the worst summer in my life. I truly thought I would be dead before I ever got to see Dr. Grubb. When my cardiologist saw me again in follow-up 6 months later (and to check if I had any success in getting in sooner, as you can keep calling to see if there are any cancellations so that you can be moved up), he was moved with such concern that he personnally put a call in to Dr. Grubb (a physician my cardiologist knew by reputation and research only). Dr. Grubb was wonderful to see me within 2-3 weeks. I credit the two of them for saving my life.

I have also heard good things about the Cleveland Clinic although I have not had any experience there for this particular condition.

Blessings

ruby