I feel tired from the journey and a little overwhelmed with information with but overall, this is positive. My local cardiologist referred me to see a specialist in PoTS. I saw him today. I have a host of symptoms and diagnoses; Rheumatoid Arthritis, Gastroparesis, Intestinal Dysmobility, Orthostatic Hypotension, query PoTS, vasovagal syncope, query nerve related bladder problems, query sensory neuropathy and probably more than I'm missing!

Given my current tests, this amazing doctor thinks it is likely that I have PoTS and autonomic dysfunction related to my family history and my past history of hypermobility syndrome. He suggested seeing a rheumatologist who has a special interest in hypermobility but I am wavering on this as I am happy with my current rheumatology clinic. My current rheum is very experienced and my Rheumatoid is fairly aggressive but she's helped managed it quite well, so I trust her.

The only thing I am worried about is if my autonomic dysfunction is related to my autoimmune disease as he said it may be progressive and more aggressive. He said it's important to have all the tests to see if my symptoms are due to my autoimmune disease or "bendiness" as he called it. I think I will feel better for knowing the cause.

He said he will oversee my treatment (and as he's a cardiologist, deal with the heart stuff, including all tests) and will refer me to a urologist and neurologist. I'm staying under my current gastro (he's a leading expert in gastroparesis) who has said he may refer me on but he's been pretty great so far.

The next few months are going to be a bit hectic as I need a load of tests; tilt table, 7 day ECG, lung function tests, exercise tests, autoimmune blood panel, bladder tests and skin biopsy to name a few but I know it's short pain for hopefully, long term gain. I just hope that my work are ok with me taking time off for all this, eek.

This doctor was the first professional in the last 2.5 years who said that I need to be treated as a whole and to not look at treating each individual symptom. He spent 40 minutes with me. More to the point, he gave me hope that I can get better. If you're reading this and have been in a similar position, keep the faith. There is hope out there, it just takes a bit of time to unpick it all.

That is great! Maybe you will get more solutions. Please continue to keep us updated. I'm dealing with genetics at Columbia and they say that I have joint hypermobility syndrome so I'll report back when my genetic tests come back.


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