Worried about upcoming rheumatologist appointment

Posted by mas0415 @mas0415, Dec 2, 2023

I am 38 years old and have a long history of strange symptoms (going back 15+) years. Mostly struggling with skin rashes and GI issues. About 5 years ago I had a bad flare up and saw a rheumatologist who completely gaslighted me and left me in tears. She told me it was all in my head and I needed mental health support. I then went to a holistic practitioner and was able to gain some relief and told myself I was going to be fine. She treated me for an imbalance of gut bacteria. Fast forward to this year, I have developed a burning rash on my left arm that will not go away. I saw an allergist who told me it was not eczema and she could not help. In September I ended up in the emergency room with pericarditis. I have developed numbness and tingling in multiple extremities that they have yet to be able to pinpoint a source for. I had a MRI and EMG that shows a likely pinched nerve in my neck but does not explain the numbness in my feet. I have developed pain and inflammation in my knees, elbows, wrists, and feet. My elbows look and feel bruised and they have been like this for weeks. I saw a rehabilitation specialist who diagnosed me with multi site bilateral tendinitis and has put in a referral for a rheumatologist. I also recently developed mild Raynauds syndrome and livedo reticularis around my elbows. I am so tired all the time and have to force myself to continue to eat. My concern is that the blood work that was ordered at the time of this referral came back all normal besides elevated segs on my CBC. Negative RA factor, negative ANA, normal inflammation markers. I am so scared that the rheumatologist will just dismiss me once again. I don’t know what is going on but something is clearly wrong and I need help but I don't understand how nothing is showing up on my blood work. I don’t want to be sick, I don’t want a chronic illness, but I want someone to believe when I say I am having pain and can’t live like this. I just wonder if someone else may have had a similar experience where blood work “looks normal” but they were still able to get a diagnosis. I have added some pictures of my rash and joints. Thank you.

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pb50 | @pb50 | Mar 3 3:34pm

In reply to @lyndal0502 "I’m so sorry you have to deal with your debilitating illness ! I too have a..." + (show)

When I lived in Manhattan for a few years my Rheumy was at Hospital for Special Surgery. Awesome place.

BeBold | @bebold | Mar 5 2:21am

I'm just throwing this out there,
Have you moved or had you moved? Had a water leak? Do you have mold exposure?
Did you have covud, no matter how mild no matter if yoy tested positive but were sick and others near you did? These kinds of random symptoms can be long covid. Just wacky collection of symptoms. Think back. I've seen many not want to blame long covid because its hard to believe but there are millions of us with the same frustration.

Did you keep a diary of events and symptoms? Can you go back and fill in blanks. Did ypu have nothing like this but did after an exposure to covid (even if you didn't get ill, you could have had it.
How about your pulse. BP sitting AND standing. Nobody ever did mine standing so I didn't know I had POTS from covid.
You said Reynauds. Have you been diagnosed or have cold hands. Don't diagnose ypurself or drs believe you less. If ypu have cold hands, just say that. If you were officially diagnosed ok. I just read abput a woman with lots of mysterious symptoms leaving her bedridden for 10 years. She decided to put in a walk-in shower and they found a small leak of carbon monoxide. No smell and didn't kill her in such small doses. You can buy monoxide detectors. Have the house mold checked by a professional. Get your wole vent system cleaned put. Could be something in your ventilation system. When all else fails, and things are so random, think sick house esp if you had recently moved, or people around you moved in if renting and brought mold with them. Or sprayed for pests how about a tick bite? A DO? A functional medicine dr (if you can afford as most don't accept insurance.)

What else can folks think off that you can't test for. I have long covid, sleep with oxygen, high blood pressure I never had before and all my labs are normal.

A new med or a new med manufacturer who uses a filler you might be allergic too? Generic drugs are a mess as they are so poorly regulated.

Think way outside the box. Sick ventilation system??? Are you growing bacteria, mold, virus in your ductwork?