Finding a Dr who understands FND and varying symptoms

[Newdx2023]

Recently diagnosed FND and PNES. Having a difficult time finding a Dr who is educated and experienced in my area of Texas and also in network with my insurance. Have any of you faced these obstacles? This frustration does not help my symptoms. I have had 3 Seizures in 12 - 15 hrs twice in the last two weeks. Along with single Seizures on multiple days in a week. I understand episodes, triggers and symptoms vary in people. Please comment or share difficulties you faced or face with getting care when newly diagnosed. Thank you for any support or suggestions

[210272]

Hi Newdx2023, I've faced similar issues with the rare condition I had and would suggest that you check some of the recent research papers and see if any of the authors are in your area. If they are, you can ask your primary care doc to find out if they take your insurance and if you can do a tele consult with them, in the first instance (so you can sound them out re their level of expertise and understanding of your personal situation). Even if they are not in your area it could be worth doing this since they may be able to recommend someone who is.

Whatever conditions we have it's important to work with someone you feel you can trust and who is willing to learn from you, since medical knowledge is incomplete and there's a lot doctors can learn from each patient they have, especially regarding the impact of the symptoms on daily life. If you find someone who talks with you, not just to you, they may well be a keeper

[Britgirlcc]

Hi, my adult daughter also has F.N.D and non epileptic seizures.

We live in Texas, just outside Dallas and UTSW Dallas is where her drs are.

Her team of drs consists of a Neurologist who specializes in movement disorders, a neurological physical therapist, psychiatrist and psychologist, all within UTSW.

Unfortunately this Dr has now moved to Tyler, Texas & we are waiting on an appointment with her new Neurologist at UTSW.

If you happen to be in this area of Texas I can give you more details.

[Newdx2023 in reply to Britgirlcc]

Do you mind sharing the Tyler Doctor's name?. I live near Tyler. Thank you

[Britgirlcc]

Dr Shilipa Chitnis UT Health East Texas Neurological Institute- A department of UT Health Tyler. Absolute best dr I have ever met.

I would highly recommend recording any of your episodes so you can show them to your Drs.

If you don’t mind me asking how old are you ?

I ask as my daughter and I have never met anyone else with FND.

Feel free to keep in touch.

[Newdx2023 in reply to Britgirlcc]

Thank you for giving me her name. I have asked my PCP for referral to Dr Chitnis. I am in my 60s. Hope your daughter likes her new Dr. I had not heard of FND or PNES before either