StaciF

22 hours ago, Colomom said:

Wish I could help   My family lives in Durango which is about 7 1/2hours from Fort Collins. My son had seen a cardiologist and another POTS specialist a number of years back at Children’s Aurora campus, but they weren’t really that great. His POTS is currently managed by a cardiologist in Durango.

Have you posted in the broader Colorado group? Good luck hope you’re able to find some help!

7 hours ago, Sarah Tee said:

@StaciF, that is a very nice logo design! I am just a newbie here. Was unwell for many years before working out only a couple of years ago that it might be dysautonomia, getting to a specialist, and having it confirmed. So I could have been on here 20 years ago … oh well.

It is a shame that the local cardiologist couldn’t (wouldn’t?) work with Dr Grubb. If I was a doctor, I would jump at the chance to learn from / collaborate with a professor with lots of published research. I mean, Dr Grubb has his own Wikipedia entry – I’m being a bit facetious, but you have to have made some decent achievements to get that.

But maybe it was a rule of the practice or the insurance, etc. that held them back.

The logo is due for an update! Insurance is the only reason that I could think of that they wouldn’t at least fill my prescriptions. I’ve spent a good part of the day reading reviews for electrophysiologists. Hopefully the next one will be a better fit. 

On 12/27/2022 at 1:11 PM, MomtoGiuliana said:

Welcome to the forum.  There is one CO dr listed in our physician list:

Physicians - Dysautonomia Information Network (DINET)

I am surprised there is only one listed.  Likely there are more we just don't have in the list.

I would look for an electrophysiologist--as a way to narrow down what cardiologists may be familiar with treating dysautonomia.

On 12/27/2022 at 5:51 PM, Sarah Tee said:

A Facebook support group that includes your new area can be a good source for local recommendations. I don’t use Facebook, so I had a family member join a support group and have a search and ask questions for me. Ended up being quite helpful for finding specialists. (The group also had a PDF list based on member recommendations that you could download after joining.)

On 12/28/2022 at 2:37 AM, Pistol said:

@StaciF I too used to see Dr Grubb but have since "graduated". I no longer travel to see him but found a local cardiologist that is awesome and works with me AND Dr Grubb. I called the university hospital in my state and asked for a cardiologist familiar with dysautonomia. Dr Grubb is very good about answering other physicians' questions, so as long as you have a knowledgeable cardiologist or neurologist they can treat you and stay in touch with Dr Grubb. That way you can see someone until you find a specialist ( but in all reality it is hard to beat Dr Grubb! ) 

On 1/3/2023 at 6:59 PM, abbyagain said:

Ok so I heard back from the friends:

Not much concrete, mostly because they either weren't happy with their doctors or were currently searching for new ones, but Dr. Sundeep Viswanathan was mentioned. He's a cardiologist specialist in POTS based out of Aurora? (I think it was Aurora). She also just had someone recommend a functional medicine group called the Healing Collective in Niwot, CO. She says take that one with a grain of salt though because she doesn't know anything about it and its a friend-of-a-friend thing. Sorry it's not more but hope it helps!

Thank you all. I’m actually not new to the forum at all. I was diagnosed forever ago, in 2005. I got locked out of my original account but was a very active volunteer many years ago when Michelle was still running things. I actually created the DINET logo, designed the newsletter etc. @MomtoGiuliana, I don’t know if you remember me. 

We did move in April and unfortunately even after talking to multiple doctors, the only person who is recommended is still Jill Schofield. I’m on long term disability and SSDI, so seeing a doctor that doesn’t take insurance and charges $2000 just to walk in the door is not feasible. 
 

At this point I know more than 9/10 doctors that I have seen. I also know not to expect anyone to have new ideas for me, which is ok, as I have a very complex case and I’m happy to have someone that can just be my maintenance doctor, ie., refill my prescriptions, order any necessary labs and be someone that I could call in an emergency. 

However after a very disappointing appointment today with a cardiologist where I was told told me they can see me but cannot prescribe any of my meds that I am on for off-label use, which is most of them, and won’t even prescribe infusions, I am sticking with Dr. Grubb and will continue to see him once a year. It’s absolutely worth the travel. The doctors I have seen here are nice, they just don’t have the knowledge that I need. 

@pistol, I did look up Dr. Viswanathan, but I can’t find anything about him treating POTS patients. I am going to find out if he takes my insurance and if he is taking new patients, it’s worth a shot to drive out there. 
 

Thanks again for the suggestions! 

On 2/4/2008 at 4:59 PM, belayergirl said:

I'm in Fort Collins, Colorado (yah, I know 10 hours from Boise), but I have had pretty darn good luck with some of the doctors from Heart Center of the Rockies here in Fort Collins. I was diagnosed maybe two years ago with POTS and NCS, after several years of struggling to get someone to take me seriously. My family doctor referred me to a cardiologist at the Heart Center, whom I adore, and this summer he referred me to an Electrophysiologist who has been wonderful! There are two EPs there and both know what they are talking about, but one definitely has a better bedside manner.

Not sure if this helps, but it might be closer than being forced to go out East.

Good Luck! And let me know if you want names and numbers, I am more than willing to help.

Can you please send me the name of the doctor you see. I am brand new to Ft. Collins, and although I see and will continue to see Dr. Grubb, I need someone local for emergencies. So far I have seen a local cardiologist and a local “Dysautonomia specialist” nurse practitioner… both very nice but both told me that they cannot prescribe any medications for me that are used for off label purposes. I have a very complicated, medication resistant case so 4 of my meds they won’t prescribe. They won’t even prescribe my infusions! If you have PCP in the area that you recommend and a gyn, please send that over too. Thank you!!!! 

PS. I searched the forum archives and it looks like anyone else that was looking for doctors in the area hit a dead end. I’m really hoping for better results! 🤞🏻

I will be moving from OH to Colorado in a few months. We will be living somewhere in the Ft. Collin’s/Loveland/Denver area. I currently see Dr. Grubb as my main doctor. I will likely continue to see him but only once a year. 

Does anyone live in the area and have recommendations for doctors? I need a PCP, neurologist, rheumatologist, cardiologist/Dysautonomia specialist and gynecologist. I also need a facility to do my weekly infusions. 
 

The only doctor listed on the physicians list does not take any insurance. I’m on disability so that’s not an option. 
 

Thanks!