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

I think that working with a rheumatologist is key, although I’m indebted to the neurologist for suggesting Sjogren’s. Now, I’m hoping I am on the right track. And, hopefully this path will bring you answers as well!

The rheumatologist said I was definitely given “bad genes.” What I’ve read is that a lot of what influences what diseases we get are our genes.

These then have “triggers” which may set the “bad genes” into action. In my case, both PBC and Sjogren’s can be triggered by infections, including things like giardiasis. Unfortunately, I contracted this three times and had the first episode, 15 years ago, for nearly a year as my physician didn’t correctly diagnosis it.

I think there does seem to be a correlation with things that make our symptoms worse, like the sun and eating high levels of carbohydrates. It’s definitely a challenge to figure out what affects us individually and what works to treat us and our symptoms. Right now I’m sticking with eating well and walking 2 or so miles a day. And of course researching and waiting for my next doctors appointment!

I had a similar rash to this, all of these symptoms plus random bruising, every joint hurting, muscle spasm, cyst or moving calcium build ups moving in my body, brain feeling like it is on fire, chronic 24/7 pain and more symptoms than I can think of right now. I owe everything to where I am for finding a psychiatrist who wanted to do an Organic Acid Test and testing for Mycotoxins of Mold (other biotoxins are on there too I believe). Part of my issues are that I’m part of the 25% of the population that can’t rid it’s body of toxins.
Look up Neil Nathan MD and see if there are any doctors he recommends near you or Ritchie Shumaker, I’m thinking you could possibly have CIRS.
I had a western doctor/Acupunturist tell me this week that when your liver or body can’t process something one reaction is through the skin via rash, sensitivity etc. My dermatologist did recommend Niacin flush free which to then find out via blood work and then in my Organic Acid Test how deprived my body was of B vitamins (even though I was taking some but my gut wasn’t absorbing half or most of the things I consume.) The test then showed a million other reasons of what was wrong with me, sibo, candida, high dopamine levels, and a slew of other issues. Which all at least validated why I felt like junk and my doctor(s) and NP are helping navigate how to make me feel better a little each day.

It has been awhile, I hope everyone is well.

I recently visited a rhumatologist and I must say that I was rather impressed. I had a full examination checking my nerves and reflexes. He did not find any cause for concern. However, he was unable to identify the cause of my facial atrophy and pain and was concerned though put it down to malabsorption/hormones.

I've been partially diagnosed with chronic fatigue syndrome, Sjogren’s and scleroderma though further testing is required until he's certain. He's wrote a letter to my gp discussing what needs to be addressed. He has requested I have a full urine and stool sample along with seeing a gastroenterologist. Given my financial situation I've decided that in the meantime it's best to go down the NHS route as after discussing the cost involved he stated that I should avoid private care unless I have medical insurance which I do not unfortunately. I still intend to visit mayo but have cancelled my appointment for now. I'll go as far as I can with the NHS and then if nothing improves I'll go to the best.

Good morning @change25 . I’m so glad that you’ve gotten some answers. Was the rheumatologist with the NHS? Have you been able to make any more appointments?
And keep doing what you’re doing—you’ve been successful so far! And we’re all right behind you! Becky

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!