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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Celebrex can cause gastrointestinal problems and ulcers. You are right about getting off the celebrex ASAP.
Hope you can get through to your primary and get
some advice for treating potential bleeding risk.
Don’t let them ghost you. Good that your lab work is OK.

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For your skin, go see a dermatologist.

For you joints and pain see ANOTHER RA doctor.

I am a transplant patient and I don't accept these doctors that I feel are gaslighting. I see all but one doctor through one main healthcare system because of the Transplant. I see an RA doc for gout and general joint pain. A Neurologist for my SFN in my feet and legs now. I see a dermatologist for annual checkup incase of cancer and a couple other specialist. My GP is in another hospital system.

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You need a Rheumy who isn’t a witch. Where do you live? You might start with the docs listed in your network and check reviews. You may get lucky and someone here can recommend one. Do you have a primary care who could help with a referral?

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Good morning it looks like you have some great advice here. I’m so sorry you are going through all this. I have to tell you I had similar experience not once but twice with the rheumatologist in our area. He dismissed me both times because I didn’t have RA markers or the proper ANA. My immunologist had sent me to him. He, of course, dismissed him as he doesn’t think he’s good, etc. etc. long story short my immunologist ran more test a few months ago that were recommended by the NIH scientist friend I. Have rare type of autoimmune issue, which basically is like a connective tissue disease, I have excessive amounts of collagen type B antibodies, which is presenting in different ways in my body. They have started me on a treatment program with a rheumatology drug with infusion therapy. . I am hoping that you get the answers you need soon and look forward to a positive outcome . I am so sorry you are suffering like this. XO

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@jabrown0407

@mas0415 The one thing that my GI doctor was able to do for me that helped my IBS-D was Rx a boutique antibiotic that does not go into your blood stream but stays in the GI system. He Dx Small Intestine Bacterial Overload (SIBO). Once I took the Xifaxin my IBS episodes went from every 5-7 days to every 3 weeks. The drug is very expensive and I had to get it from Canada because my drug insurance just does not do well with high priced boutique drugs. It was worth every penny I spent. It was a gamble since IBSO is not easy to positively diagnose. He ran the test and I came back normal, but he went with his intuition and experience.
I wish you success on your journey.

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Holy cow! You’re not kidding that’s expensive!

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My Rheumatologist diagnosed me with probable seronegative rheumatoid arthritis on my first appointment that was less than a year ago. This type does not show in blood work. I was on a short term prescription of prednisone at that time. He got me off that in a shorter than usual time frame - with no ill effects. He doubled my Tylenol for arthritis to two, three times a day. He started me on weekly methotrexate injections with Leucovorin the following day and daily folic acid except on methotrexate day. Most recently he added 2 tablets daily of Apo-Hydroxyquine. My pain is now minimal.
Good luck on getting a diagnosis.

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Hi Mas0145, I keep thinking about you and your situation. Do you think it might be prudent to find an immunologist and have him run some tests to see if he might be able to diagnose you? If not, then you’re not up for that I certainly understand but it’s just a thought. Take care .

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@leigh17

Hi Mas0145, I keep thinking about you and your situation. Do you think it might be prudent to find an immunologist and have him run some tests to see if he might be able to diagnose you? If not, then you’re not up for that I certainly understand but it’s just a thought. Take care .

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One more quick note, I forgot to put it in. I also have had Raynaud’s for years, I did not realize until I developed Sjogren’s and this that typically auto immune diseases are not singular .

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I’m so sorry you have to deal with your debilitating illness ! I too have a form of a connective tissue illness plus pain n extreme exhaustion from fibromyalgia ! It’s truly tough! BUT
I finally am going to a “ top notch “ rheumotologist in Manhattan on Monday who was head of dept of Rheumatology at Hospital for Special Surgery -
I think a big part of the equation is to find and go see the top rheumotologist you get to.. (my best friend recommended me to dr paget )
I too am nervous about my upcoming appt, but mainly because my energy level is so low , it seems as if it’s a momentous task
But i hired a car service, my daughter is coming with me - and I’ll make it happen
Is there any way possible you can find the very best rheumotologist not far from you? Maybe call the largest hospital in ur area and ask who the head of that dept is n try to get soonest spot available
Just because nothing shows up in bloodwork, that’s not always a conclusive answer
You are presenting with lots of obvious “eye-seeing “ symptoms
Good luck sweetheart!
You are NOT alone as i feel your frustration
Over last several years, I’ve seen 5 rheumotologists and nothing has helped me - a few of the meds recommended to me , i wasn’t able to tolerate
Let me know how you do., but get to the best dr you can find and hopefully u will be lucky enuf that he w take ur insurance too
Lynda L

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@mas0145. Several members have suggested finding a good rheumatologist. Two organizations try to help people with just that. They are:
GARD,genetic and rare diseases information center: https://rarediseases.info.nih.gov/
NORD, national organization for rare diseases: https://rarediseases.org/
You can also call a university hospital and ask for recommendations.
Please let me know if you have any success!

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