Denver CIDP Specialist
November 18, 2016 at 1:41 am
I have been told by two neurologists that I may have CIDP, and pending one more EMG/NCS I’ll start IVIG. There are no “Centers of Excellence” in Denver. I really like both of the neurologists whom I have consulted, but one won’t be in-network with my insurance next year and the other is a 45-min drive. I’m doing research to learn about alternative neurologists in Metro Denver. I realize this is a rare condition, but I’d like to know if there are any Denver-area doctors who see a lot of CIDP cases. One of the docs says he has a lot of CIDP cases (25-30) so his name may pop up. I have spoken with the Denver area liaison already. She was very nice and helpful, but wasn’t personally aware of a CIDP specialist here. Thanks in advance!
November 23, 2016 at 9:30 am
My solution was to travel, as needed, (about once a year) to where my doctor of choice was and then, find a local doctor willing to administer the treatments recommended by the specialist.
So, my RX treatment tree spread like this- Neuromuscular Specialist out of state, local (in state) neurologist of no particular specialty, and finally, my local hematologist at the infusion center near my home.
November 27, 2016 at 11:45 pm
Thank you jk!
August 28, 2017 at 4:29 pm
I was recently diagnosed with CIDP and live in Denver as well. Did you ever find a local CIDP specialist?
August 28, 2017 at 4:37 pm
I currently see Dr. Adam Wolff at Porter. According to his infusion nurse, he sees 30-40 cases of CIDP regularly. I have also seen Dr. Simon Oh in Aurora. He told me that he sees more CIDP than anyone in Denver. I’m not sure, but I think his case # estimate was around 40 too. I also had my OB/GYN at University of Colorado hospital look into docs there, and that resulted in recommendations for Dr. Quan or Dr. Ringel, whom I haven’t seen. I’ve also had a few people suggest Dr. Round at Rose, but haven’t seen him.
Sorry to hear about your diagnosis. Who are you seeing? Will you be receiving IVIG? Where? What part of town are you in? Do you need/have a neuro PT? I went to Colorado Neurological Institute near Santa Fe and Hampden and they are great PT specialists for neuro.
August 28, 2017 at 7:25 pm
I just got diagnosed by a neurologist at PSL named Dr. Feldman. I have made an appointment with a hematologist at PSL named Dr Nash who I’ve heard very good things about. I was originally supposed to see Dr Wolff at Porter which is my primary hospital but his staff was so rude that I transferred my referral to PSL. Now I’m going to get a second opinion from Dr Antilone in his practice but at the Lonetree location because I can’t deal with those ladies at the front desk at Porter. My protein came back normal so not sure what treatment I will be receiving yet. I haven’t started PT for CIDP although I have done PT for other related stuff pre diagnosis at that was at Porter with Carissa who is wonderful. I have my Dr Antilone appointment Thursday then my Dr Feldman and Dr Nash the Tuesday after Labor Day so hopefully I’ll know more then. If there’s anyone or anything else you recommend please let me know. I’m a proactive person and a Denver native so traveling around Colorado isn’t an issue for me. Thank you for your reply.
August 28, 2017 at 7:49 pm
Also I’m curious to know how you’re doing and if you could pick between your Denver doctors and going to one of the specialists listed on this website who you would choose? I’ve been reading first treatment is key so I don’t want to mess it up.
August 28, 2017 at 10:32 pm
Hmm, I wonder if there is a way for us to share our contact information without posting it on here? I’d rather take this conversation offline if we can, especially related to discussing providers. Are you on any of the Facebook CIDP or GBS pages? I do have some further thoughts about docs. My initials are BLH and I post/comment there frequently.
I wouldn’t worry too much about your first treatment being “right”. Early treatment is important, but it seems most docs follow a pretty standard protocol of first trying IVIG. 2g/kg over ~4 days, then 1g/kg every 4 weeks. For me, I’m about 140-145 pounds, so I received 140g of Privigen, 35g a day for 4 days. Then for the maintenance doses, I get 65g over one day. (slightly smaller dose since I lost some weight along the way).
August 29, 2017 at 1:36 pm
Hmm, I wonder if there is a way for us to share our contact information without posting it on here? I’d rather take this conversation offline if we can, especially related to discussing providers.
Im new here but recently looked for a way to private message someone. Found a post that indicated PM functions were disabled with last board update as “they” did not feel that ability was relevant to the board’s purpose.
August 30, 2017 at 11:08 pm
I’m not part of any groups except for this one because this is all new to me. I’ll search FB and hopefully reach you soon.
For the people who have set up this website you may take a lesson from the Health Unlocked Pernicious Anemia website. You can get in with your own password and message people privately just sayin. And it’s just overall more user friendly:) No disrespect.
August 30, 2017 at 11:44 pm
Sorry to be so “cloak and dagger” about the whole thing! I’m fairly private about my diagnosis. Anyhow, I messaged you through the site you listed. Looking forward to connecting.
September 1, 2017 at 11:47 am
I empathize with the desire for privacy. Facebook accounts require your real name, do they not?
September 1, 2017 at 5:37 pm
JK – Yes, facebook profiles do require your real name, and it took me months to join the groups for that reason. But the groups are closed, so no one can see your posts unless you are accepted into the group. Also, the part of your profile that shows the groups you’re in does not include closed groups. So to see that I am in the group, you’d have to pull up the group, and it seems unlikely any of my casual acquaintances would do that since most people don’t even know what CIDP is. However, I think this forum is searchable by non-members from search engines, and listing an email address or full name would make that searchable on the internet, would it not? Let’s say I applied for a job and someone googled my email address. Maybe my thinking isn’t 100% logical, but I guess I don’t feel comfortable listing an email here. It’s too bad you can’t opt into private messaging on this forum. I have found the 3 facebook closed groups to be very active and helpful.
September 2, 2017 at 1:01 pm
B, you are 100% correct.
Not only are forums searchable by non-members they are often routinely searched, automatically, and forever by web crawlers bots and specifically google bot. “Bots” find, and therefore, they know, everything.
I agree with you, it is imprudent to list personal identifiable information anywhere you don’t absolutely have to.
On the other hand, to say, ‘let’s meet Tuesday next week between 10 and 11 am at the main street Starbucks in Briggsdale’ is probably ok.
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