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steve8004

Diabetic Autonomic Neuropathy- Need a number of resources ASAP- Please Help

Posted by @steve8004 in Brain & Nervous System, Jan 23, 2012

Hello. I am looking for other patients with the diagnosis of Diabetic Autonomic Neuropathy or other autonomic issues, My objective is to find:

1. conducting a national search for an internist willing and able to coordinate my care with a facility such as Mayo, Cleveland Clinic, Johns Hopkins, etc. Must be willing to collaborate with a team of specialists vs. making referrals to local physicians. My case goes across 6 to 7 different specialties.

2. Support group for people with my condition or similar type of autonomic problems. A support group for DAN patients is preferred.

3. A non profit or private resource to provide financial assistance with paying medical related bills, cost of relocation/ subsidies towards housing- I have tried HUD resources- no such luck due to long waiting lists-5 to 8 years from now.

If you know of anyone or a patient advocate resource please email me:
steve@steveeisenberg.com and steve.eisenberg@gmail.com



Tags: eye conditions, mental health, sleep problems, Other

pammi likes this
stella1

Posted by @stella1, Feb 1, 2012

Ihave dysautonomia, POTS postural orthostatic tacycardia. I have talked to people all over the country since my diagnosis. I amnot sure if this would be helpful or not bt Blair Grubb,MD at the Medical College of Ohio in Toledo is a well known researchers in dysautonomias. He also happens to ba a great man and great physician. Hope this helps you!!!!

steve8004

Posted by @steve8004, Feb 1, 2012

Many thanks for sharing! I have heard of both diagnoses from other patients. Someone else mentioned Dr. Grubb to me the other day. Although, I will have to find out if he treats DAN patients. Let me know if I can be of assistance to you.

twin1of2

Posted by @twin1of2, Feb 10, 2012

I was recently told about Dr. Grubb because of Cardiac Autonomic Neuropathy related to T1D. It seems he specializes only in POTS. I sent email but no reply. I don't know if POTS is progressive, whereas CAN (DAN) is.
I have begun to conclude that living near a major medical ctr may be necessary for me. The trouble is these are mostly in big cities and rent is really high. I am young but have had T1D for over 18 years so "they" tell my that after this much time I will continue to develop DAN both central and periperhal.

Anonymous likes this
steve8004

Posted by @steve8004, Feb 10, 2012

I haven't heard back from Dr. Grubb either via email. There are some other doctors out there who treat POTS at he cleveland clinc. They have the number 1 cardiac program in the country. Yes, DAN is progressive. Have you seen any sites/ support groups for patients with DAN online?

twin1of2

Posted by @twin1of2, Feb 10, 2012

Not yet, but I have found it hard to look. I've been through the JDRF groups and TuDiabetes but no help for DAN. Right now I am blown away cause I've tried so hard to avoid all this. I have now been seen by 3 specialists for different body parts but i am really wondering how I will get insurance after my parents insurance stops covering me - soon. I think those of us with T1 are going to have a hard time paying for health care. I no longer expect to hear from Dr. Grubb

alexsimon

Posted by @alexsimon, Feb 3, 2012

Hello Steve8004 -
If you are interested in seeing a Mayo Clinic physician please click on the "request an appointment" button on the upper right hand corner of your screen. Mayo Clinic is happy to coordinate your care with your primary care physician.

steve8004

Posted by @steve8004, Feb 3, 2012

Thanks. I have seen many doctors at the clinic. The problem is finding a physician outside of Mayo where I am located. Most internists will not take on this responsibility due to the amount of extra time and effort required work with a team of specialists remotely. Instead, they will make referrals to physicians they know in their geogrpic area. For a complex case, this model does not work. Any ideas? i am exploring medical concierge and patient advocate services for potential leads.

alexsimon

Posted by @alexsimon, Feb 3, 2012

Hi - my best recommendation would be to talke with your Mayo physicians and see if they can recommend anyone in your area. A lot of our physicians can make referrals about this.

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