debwaldino
New Member
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
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
![ME/CFS lecture | Dr Nancy Klimas | 2011 [Chronic Fatigue Syndrome / SEID / New Zealand] - YouTube](data:image/gif;base64,R0lGODlhAQABAIAAAAAAAP///yH5BAEAAAAALAAAAAABAAEAAAIBRAA7)
