Docs In Uk?

[ladyt]

Hi..

I dont really dont know what to do anymore. For years my only doc that have done anything close to treatment is my cardio. But for the last years i only go there once a year and he feels he has noting more to offer. He is not a spesaialist in dys in anyway. He ust has gotten stuck whit some patiens like me cause nobodie els whant us i gess. He put me on midodrin an I am greatfull for that.

But so i have been my own doc, whit lilte luck. Some i have managed, but i am getting very frustratied by how lilte help I gett from the medical profesion. And i am considering trying a doc in uk or other plac in europe. But what can a spesialist do ? is it worht it? And how much does it cost?

I qm trying to gett test to see if mastosystosis can be a part of my pots. But it seem also to be dificult to find out, and they seems to be very sceptical. I ust dont know what to do. Any advise ? i hope so .. I really really need it..... tnx

[Sarah4444]

Hi casper - I am up in Canada and am running into the same kind of frustrations. I am also waiting for an appointment regarding mastocytosis. What makes it really hard is that it seems that many doctors seem to disagree about the issues related to mast cell disorders. It's also hard to find autonomic specialists here - I think we have two in my province, and I have an appointment with one at the end of January. I hope he knows something about this mast cell stuff and can help me figure out some of the connections, which symptoms are POTS and which may be anaphalaxis. The lack of medical knowledge and practitioners in these areas is so frustrating and makes all this even harder. Where do you live?

[ladyt]

Hi =)

I live in scandinavia. Dont have anything close to spesialist of any sort here. There are some in oslo that know a litle about mastocytosis, but i dont thing they know about mast cell disordes beside it. It seems like docs dont really know what to agree about alot of things.

I really wish i had the brains to be my own doc. But i dont. Belive me I try. I figured out that penegran helped to relive some of my symtoms. I desided to try asprin. But i wish the doc could offer more than writing out presicriptions. At least try to help me in some lilte way.

Can I ask what meds you are using? And wht they help for? Why do u think u have a mast cell disorder? I dont mean to pry, i ust try to gett my head around this all. And i think the info i can gett here is my best bett on finding a way forward.

I have an appointment to a hemotalogy doc at the hospital rigth befor x-mas. They say they can diagnose mastocytisis. I am not sure. Cause i understand its very dificult to do so. Even whit the bone test. It has to been done rigth. THen I read that the test dont hurt much if they preform it rigth. But the medical adviser said it would. I am not afraid of pain, nor needels. But i am afraid of coming up emtyhanded again. Emtyhanded in the way that i dont feel secure in that they will do it rigth or take me serious.

But i have to keep trying i gess. Are the any online medical shcool for dummies out there

I hope u gett some help from the docs u are seing. Have u been to the autonomic spesialist before? What can such a doc do that a gp cant? Do they make a difrense?

Have a lovley day

[Sarah4444]

I understand how frustrated you are, I feel the same way. I often feel totally overwhelmed trying to sort out my own medical issues, trying meds on my own and seeking out specialists all over who may or may not be able to help. I did find an autonomic specialist and had a tilt table test in his lab to confirm that I have POTS, but he is very busy and I can't actually see him for a consultation until the end of January.

I am currently taking midodrine 5mg. four times a day, and I have started taking anti-histamines and sodium cromoglycate to see if they help. If you would like to know the exact meds and doses, just PM me and let me know. I think they are helping a bit and hope very much that the mast cell specialist can help me figure out the mast cell issues and advise me about medications.

The main reason I suspect mast cell involvement is that along with severe blood pressure crashes over the summer, I had skin itching, flushing, rashes that came and went, and other symptoms that seem to fit the mast cell/POTS profile. Have you read the article by Shibao et al? If not, let me know and I'll send you the link.

Although I believe I have had symptoms for decades, I only recently figured out what was happening - I am new to this and still figuring things out for myself, but I'd be happy to try to help you any way I can.