At a loss, multiple consultations still no answer...any idea?

Hi Becky, nice to hear from you as always.

No, the rhumatologist I saw worked at a private clinic. I'm not sure if he was sympathetic due to my age or situation but he refferd me back to the NHS. As well as providing me with his email should I need to update him or ask any further questions.

By going for a private consultation it's basically skipped a few months of waiting for the NHS.

I've still got an appointment with a neurologist and hopefully my GP will continue with what the rheumatologist
has recommended. If not Mr annoying will return 🙂

I love your term ‘Mr. annoying’! I don’t think I want to call you by that name, so could you maybe tell me your real name?

I can just imagine when my phone number is displayed on their system the reaction of "oh no it's him again"

Of course, my name is Edward.

You sound like your spirits have lifted! Just keep on being ‘Mr. annoying’, Edward!

Definitely, it's reassuring that there's something wrong; where it isn't some phantom illness.

Initially when those blood test results came back eveything began stagnating. While it is never nice to be diagnosed with something that is potentially life changing at least the steps are there to deal with whatever comes next.

I know a lot of people on this forum go for too long without answers so again I'm extremely grateful and fortunate that it has gone the way it has.

@change25 Your pictures the red butterfly on your cheeks, and mine, set to to searching in my own records and scans. I found those pictures, or like them, on places like Wikipedia, and on my own genome analysis. I do not know about yours, but mine is now dx as "Systemic Capillary Leak Syndrome", also called "Clarkson's Disease." It is probably related to the genes/proteins related to my GSN/FKTN/Brugada syndromes JAK2, CALR, or MPL. I have the JAK2, the CALR, but not the MPL. I am personally very glad to know it is not the shingles the doc and hospital called it on me, without evidence.

Hey Karl, a dermatologist diagnosed me with rosacea. There could be more to the rash than what was previously diagnosed. So it may be worth going elsewhere for a 2nd opinion, cheers.

I have been to about twenty dermatologists, and received dx from about 4-5 of them as rosacea. About twenty others dxed everything from shingles to frostbite. But there was always some negative kicker in the dx. But it finally came down to a clear dx from genetics and clinical data.

@change25 Good morning. Just wondering how you’ve been doing! Anything new to tell us?

Hey Becky, nice to hear from you. I hope you are doing well.

It's been pretty stagnant... I did see a dermatologist recently and they couldn't explain my rash and lip swelling so I've been referred to another specialist. I've also got an MRI scheduled but with the backlog it may take sometime. As of late I've had some chest and leg pain and an awful headaches so my GP wants me to go for an ECG tomorrow just to be careful. It's the not knowing which is frustrating as I thought some progress was being made. I'm just hopeful that the MRI will show something as anything is better than nothing regardless of how serious it is.