Worried about upcoming rheumatologist appointment

What a struggle you’ve had to manage!
I have RA. I was diagnosed in 2012 with an acute onset of symptoms that were more PMR-like than RA - meaning while I did have hand numbness and weakness, the sudden onset pain was in bilateral shoulders, hips, knees and ankles. I was RA Factor negative, though five yrs later I was tested and am now factor positive. But I’ve never had much of the hallmark blood results other than liver enzyme spikes from methotrexate - which I am no longer on. So there may be ’typical’ but there is plenty of atypical - both in clinical presentation and in blood test results.
Of course none of us in this community this are able to offer medical advice. We can describe our experiences and make non-clinical suggestions. You have such a mish mash of symptoms that I agree you need a good Rheumatologist and I would hope you could find one aligned with a multidisciplinary capability - like a Mayo Clini or a good teaching hospital.

I’m sending good Juju your way!!

Second the motion for a tertiary referral clinic such as
Mayo or a university with communicating specialists.
Would advocate dermatology and rheumatology coordination. There are more advanced tests to be done.
Your problem is obviously autoimmune. No gaslighting those photos. You may also need a skin biopsy which is
simple with a local anesthetic. The new rheumatologist
will be more professional in working up a diagnostic plan and consulting with their team.
Wishing you success. Stay informed of your results and
make sure your doctors are collaborating.

Awesome advice!!

Where do you live? Is it in an area with a teaching hospital? If so you might consider seeing a doctor there - they might be better suited to help you. I agree that rheumatology is iffy at best. I have had vague and incomplete answers from the ones I have seen. I do my best to work with them because I actually have a problem that is in their wheelhouse, however little is known about it and the most common reply I get is "every patient is different".
Doctors in practice not a part of a teaching environment are less prepared to work with patients that do not have mainstream problems. Insurance companies have seen to it that your appointment is short, targeted and with an assumption that there is a medicine that can be Rx-ed once the tests reveal the problem.
Mayo Clinic has a referral service as does Cleveland Clinic and I suspect several other major medical schools offer the same type service. I would think that consulting services would enable you to have them see you but have your local doctors treat you. My experience is that teaching environments are open to consulting with another specialty whereas that mind set is uncommon in the private practice world.
I have been fighting multiple problems for years, brought on by an adverse reaction to a vaccination 5 years ago. It is not easy to unwind the symptoms to find a treatable problem.
I have had 95% of the tests to come back normal - yet not one doctor has ever said I am well, or it is in my mind - they agree the problems are real, but finding solutions is difficult.
BTW - I had a doctor 50 years ago tell me that menstrual cramps were in my mind - I was denying my childbearing role in society. He said it was all in my mind, needed mental eval. He was wrong - I was right. You know how you feel. Walk away from any doctor who you believe is not helping you.

Well good for you! It doesn't feel like it, but you have done great work!...
You have got an appointment, and have great pictures - be sure to take those with you to your appointment!
I so understand your despair over these symptoms 'without a name'.
You are not alone in these years of 'Not yet Diagnosised'. - for the first 20 years of my symptoms there was the on-going debate of 'what diagnosis' - if any! (yes, including the dreaded, 'all in your head' dismissal)
This is such a burden of distress, a whole extra layer on top of your symptoms. Nothing is more gut wrenching, than condesending disregard for your struggles; especially from the person you thought was going to be your answer.
You are not alone!
Hopefully, this specialist will treat the patient, not the lab reports - someone who will jump into the puzzle of 'what do we have here?'
You have been so wise in pushing past this terrible experience. You have done so well in getting a new appointment. You need a partner in your journey through the tough days of hunting for that diagnosis: an advocate who will understand the great strain you have been carrying in this...
A doctor who will know that medical science, despite the amazing advances, still does not have an answer for everything! You need a supportive medical team to help you handle these life-altering symptoms, until a diagnosis is made.
Your pictures will help; 'testifying' to your symptoms - which can disappear just before an appointment!
You have exercised courage in forging ahead, despite the past.
When this new doc, starts to lay out the plan of attack, ask for recommendations for things to help you cope: such as physio?; some clinics have their own team of counselors to help you cope through this long process - this is vital. Perhaps there are some peer groups of others who are in this no- man's zone of 'waiting for a diagnosis' - or simply others who have similar symptoms - the struggle is real.
This does seem to be in the 'autoimmune camp'.. and the possibilities are endless. You need a medical team that will 'stay the course' as you uncover the possible diagnosis, while eliminating other labels.
It may help to take with you a concise written history, of your symptoms, medications, treatments tried; in this way you do not forget some important points.
Also, questions, which hopefully will be answered as your appointment unfolds.
I do pray you will get the support you need, as well as a clear plan of ' how will we proceed'.
Can someone reliable go with you as another set of ears, to help you remember all that is said? - or write down the instructions yourself.
When is the appointment?
Will you please let us know how you get on?
You are going in the right direction!
Press on!
All the best!

Can you have a biopsy of the rash at dermatology?

If rheumatology is scary for you. maybe a functional medicine doc could be helpful. They look at the whole body system. You have a lot going on!

Have you done any Lyme tests? Make sure it is a Western Blot, not the Elisa, which has a lot of false negatives. There is controversy about interpreting Lyme tests: look for Lyme-specific bands and not the absolute number.

Hi @mas0415

I’m going to venture into WAG (wild ars guess) territory

You might consult a vasculitis dermatologist or possibly a rheumatologist who sees cutaneous vasculitis patients.

Your LR, especially the legs looks like mine from cutaneous polyarteritis nodosa. (Please note the “cutaneous” is an important part of the name – its symptoms are relatively mild compared with systemic polyarteritis nodosa and most often managed by dermatologists.) My autoimmune LR is more pronounced with heat e.g. when coming out of the shower.

And I also have Raynaud’s-like cold fingers and toes. They don’t change color, but the false-color infrared images (FLIR camera) were persuasive for my rheumy!

If you and your medical team decide to pursue cPAN as a possibility, might you be near one of the experts that co-authored this paper https://pubmed.ncbi.nlm.nih.gov/29136340/

Good advice. Skin biopsies can confirm the diagnosis of vasculitis
and point to appropriate treatment. A dermatologist at a referral center may be the best specialist to make the diagnosis and head the team management.

Be thankful you got an appt. Be confident in why you think you need to be seen.

I am in Florida. I think there is a Mayo Clinic in Jacksonville but I am on the west coast. I actually work for a hospital and am fortunate to have decent healthcare coverage but it is limited to our network.
I know the experience of being dismissed about exaggerated period cramps. I cried, missed school, threw up, was unable to walk and had doctors tell me to take ibuprofen. 14 years of that and finally had a doctor do exploratory surgery to find a birth defect requiring a partial removal of the top of my uterus that was causing serious issues in my body. The years of dismal of pain and being told to tone down my anxiety has created a lot self doubt and more anxiety within myself.
I’m sorry you have experienced that as well, but I am glad you now have healthcare providers acknowledging you.
Thank you for your advice.