Seeking advice on USA / Europe doctors/clinics

[debwaldino]

Hi all,

I've been ill for 3 years and on a steady decline, with occassional flare-ups, including a recent flare-up which seems to have confirmed that there is a strong component of autoimmunity to my issues (sudden hearing loss responsive to steroids, and a positive ANA blood test - but no clear diagnosis). I also have POTS/dysautonomia/autonomic dysfunction/erythromelalgia and some signs of MCAS.

I am based in Ireland where unfortunately care for these unusual illnesses is beyond negligible - most doctors have not even heard of them. I am blessed to have a great family who are pooling resources so that I can see a doctor in the USA or Europe. I'm beginning to think something like IVIG may be of benefit to me, possibly with a TNF-alpha blocker/other immunosuppressant. But doctors here seem to be very far behind the curve in terms of newer treatments/immun-modulation treatments.

I'm looking for guidance on where best to go in the USA or Europe (my plan is to apply to a few places and see where turns up first).

Would people recommend the following places for the type of illness I am describing (I really need a doctor who will listen - a rare bird!):

1. Dr Jill Schofield at the Centre for Multisystem disease
2. Dr Kaufman - the Center for Complex Disease
3. Dr Peter Novak - Brigham and Women's Hospital Boston
4. I can't find any one similar in the UK/Europe, but if any one knows of any doctors/clinics I'd be extremely grateful

I realise there will probably be a long waiting list for these places/especially with COVID, but at present they are my only lifeline.

If anyone has any feedback on any of these or could recommend any other doctors/clinics, you've no idea how thankful I will be!

Thanks for reading this!
Health to all,
Dbwaldino

 

[@ROSIE]

Hi all,

I've been ill for 3 years and on a steady decline, with occassional flare-ups, including a recent flare-up which seems to have confirmed that there is a strong component of autoimmunity to my issues (sudden hearing loss responsive to steroids, and a positive ANA blood test - but no clear diagnosis). I also have POTS/dysautonomia/autonomic dysfunction/erythromelalgia and some signs of MCAS.

I am based in Ireland where unfortunately care for these unusual illnesses is beyond negligible - most doctors have not even heard of them. I am blessed to have a great family who are pooling resources so that I can see a doctor in the USA or Europe. I'm beginning to think something like IVIG may be of benefit to me, possibly with a TNF-alpha blocker/other immunosuppressant. But doctors here seem to be very far behind the curve in terms of newer treatments/immun-modulation treatments.

I'm looking for guidance on where best to go in the USA or Europe (my plan is to apply to a few places and see where turns up first).

Would people recommend the following places for the type of illness I am describing (I really need a doctor who will listen - a rare bird!):

1. Dr Jill Schofield at the Centre for Multisystem disease
2. Dr Kaufman - the Center for Complex Disease
3. Dr Peter Novak - Brigham and Women's Hospital Boston
4. I can't find any one similar in the UK/Europe, but if any one knows of any doctors/clinics I'd be extremely grateful

I realise there will probably be a long waiting list for these places/especially with COVID, but at present they are my only lifeline.

If anyone has any feedback on any of these or could recommend any other doctors/clinics, you've no idea how thankful I will be!

Thanks for reading this!
Health to all,
Dbwaldino

Hello! Just coming across your post. Did you end up finding anyone you would recommend? I am in a similar situation and live in the US but would travel if it meant finding someone who could truly help me.

I hope your health has improved. Thank you for any guidance you can offer. -Rose

 

[bupsy]

I'm in New Zealand but if I had lots of money I'd see Dr Kaufman, he is VERY expensive.

 

[SarahJane]

Please don’t get your hopes up for the US. The state of “healthcare” in the US is very dismal. It’s extremely difficult to receive adequate care, and for those who have “rare” or complex health issues, it’s almost impossible. I do have a friend though who receives what seems to be reasonably good care for POTS at the Mayo Clinic. Although she very likely also has EDS, which they failed to diagnose (chose to overlook?) Good Luck.