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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2catmom | @2catmom | Dec 4, 2023

In reply to @seniormed "Good advice. Skin biopsies can confirm the diagnosis of vasculitis and point to appropriate treatment. A..." + (show)

...an additional note if you go down the WAG, cutaneous vasculitis biopsy pathway

+ choose a dermatologist or dermopathologist who understands the subtilties of sampling for cutaneous vasculitis

+ Here’s an open access 2010 classic on “The histological assessment of cutaneous vasculitis”
https://onlinelibrary.wiley.com/doi/10.1111/j.1365-2559.2009.03443.x
+ cPAN subcutaneous vessel damage is focal and evolves over time

+ my experiences
In retrospect, there was an element of good fortune in my diagnosis process: my wizened dermatologist knew that my livedo reticularis and subcutaneous nodules were “rare”, and he referred me to an expert dermopathologist for the 2007 biopsy. That physician spent what seemed like an inordinate amount of time choosing the ‘optimal nodule’ to biopsy.

Earlier this year I had a flair and a less-experienced derm, and I, didn’t know to biopsy the center of my obvious, circular livedo reticularis pattern (see page 8 of above url or Figs 3 & 4 in https://www.frontiersin.org/articles/10.3389/fphys.2020.00994/full) Though the biopsy was negative, the immediate reaction, 2-months later, of the vasculitis dermatologist consult was “classic cPAN.”
If I ever need another biopsy, I know to grill the physician about his/her knowledge of productive sampling for cutaneous vasculitis.

mas0415 | @mas0415 | Dec 4, 2023

In reply to @thisoldewe "Well good for you! It doesn't feel like it, but you have done great work!... You..." + (show)

@thisoldewe

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!

Jump to this post

Thank you so much for the support and kind words. I have actually been doing physical therapy for my pinched nerve and the team has been so supportive and has encouraged me to be vocal to my doctors. The referral was sent last week and I have yet to hear from the rheumatologist office. The plan is to call and follow up tomorrow, hopefully they will give me a date!

mas0415 | @mas0415 | Dec 4, 2023

In reply to @2catmom "Hi @mas0415 I’m going to venture into WAG (wild ars guess) territory You might consult a..." + (show)

Thank you for sharing, I will look into this!

Christine | @thisoldewe | Dec 4, 2023

In reply to @mas0415 "Thank you so much for the support and kind words. I have actually been doing physical..." + (show)

Great! Hope this works out!

jabrown0407 | @jabrown0407 | Dec 5, 2023

In reply to @mas0415 "I am in Florida. I think there is a Mayo Clinic in Jacksonville but I am..." + (show)

@mas0415 Thank you so much for your reply - yes the medical world is not perfect. I would recommend you follow thru with the Rheumatologist. They will run a bunch of tests and most likely eliminate most of the problems in their wheelhouse. You may show to be positive to one or more tests in which case they can move to the treatment stage. If everything tests negative or normal then you have eliminated the autoimmune issues they deal with - not a bad thing at all. In either case you will know a lot more about yourself.

I have had to peel the onion myself and take control of what is going on as far a medical investigation.

My approach revealed the following issues - They have found tumors which necessitated a hysterectomy; I had IBS-D diagnosed just one year earlier that the hysterectomy completely eliminated. A collection of inflammation fluid in my right shoulder which necessitated aspiration and shoulder injections - one doctor recommend a shoulder replacement operation. A floating kidney - rare, constant pain, and untreated since most doctors don't consider it a problem that needs correcting - they wanted to say it was adhesions. Bilateral trochanter bursitis which has persisted for years and the only treatment offered is steroid injections. Osteoarthritis in my knees for which I receive injections twice a year. I also had a hip pain that was diagnosed by a doctor as an impingement - solvable by teaching me how to walk with my feet a hip's width feet apart. The list goes on - but I won't bore you with more.

My point being doctors want to lump symptoms together and that only got me a diagnosis of PRM from my Rheumy. The treatment for this is long term high doses of steroids - they lumped every join and muscle pain into the same diagnosis ignoring me.

I will admit doctors can only treat what they know about and they can only treat what the tests lead them to. Unfortunately not all problems are known and not all patients have simple problems.

marye2 | @marye2 | Dec 6, 2023

MCTD also has an overlap of Fibromyalgia. Over time, I have found that food intolerances (Ie potatoes/tomatoes, sugar and aspartame, dairy (yogurt seems ok), some spices) have an effect. Avoid processed foods and eat simple foods. Also, a daily walk, regardless of the pain you are experiencing will help. Water aerobics gives me painfree movement of everything and helps immensely. If you do not know the stretch to relieve tight muscles and tendons, PT is a great place to learn them and it is a great way to work with pain and loss of strength. Also, pay attention to how much water you drink daily: it really matters. I try for 32 oz or more daily. Things work better, including my kidneys. In older age, hydration really affects kidney readings. Keep in mind that tests do not always read what is going on. Paying attention to food intake and daily movement really help. For your skin issues, find a board certified dermatologist and consider asking for a biopsy to diagnose. My niece has had eczema her whole life (50 years) and found out that treating it as a fungus is helping. I limit soaps, shampoos and cleaning products to natural--nothing with fragrance, stearate and other things. It is mostly trial and error: many times the Drs do not have a way to help. I use benedryl cream, Aussie Blue Aloe spray for itches (it really is for sunburn) for skin woes. Avoid soaking in bath water. I recently had a genticular nerve block for my knee/calf and it is helping: I do not have arthritis but that calf and leg are miserable.

Becky, Volunteer Mentor | @becsbuddy | Dec 7, 2023

In reply to @thisoldewe "Well good for you! It doesn't feel like it, but you have done great work!... You..." + (show)

@thisoldewe

Jump to this post

@thisoldewe Such a wonderful, informative and helpful response!! Thank you. Becky

yesibeleive | @yesibeleive | Dec 8, 2023

In reply to @mas0415 "I am in Florida. I think there is a Mayo Clinic in Jacksonville but I am..." + (show)

You need a highly rated rheumatologist or endocrinologist.
Keep pushing forward.
Doctors do make mistakes you just haven't found yours yet.
Check their ratings..

aprilgreen | @aprilgreen | Dec 8, 2023

Im so sorry you have to go through this. In the 30+ years that I have been dealing with autoimmune diseases I have been gaslighted many times by various doctors, told my symptoms were in my head or implied that I was exaggerating. It is a terrible feel. All I can say to that is when that happens, find a new doctor and keep looking until you find one that you feel believes and understands what you are saying. It’s so important to have a medical team who you feel is on your side.
I have had Juvenile Rheumatoid Arthritis since I was 12 years old (now 44) and I have never had abnormal labs or a positive RA factor, so it is entirely possible that your labs are normal and you do still RA or another autoimmune disorder.
I personally have had good success with doctors at teaching hospitals so I agree that that may be a good path to explore. If you have the means, you may also consider seeing a functional or integrative medicine doctor. They take a more holistic approach. Especially considering that you have such a wide range of symptoms, they are more likely to try to get to the root cause of all of your symptoms vs individual specialists treating each set of symptoms in a silo.
Also, since you found some relief from treating your gut bacteria imbalance in the past, you may consider doing an elimination diet (under the supervision of a medical professional of course). It was literally a life saver and total game changer for me. I have been in remission for over a decade now from the JRA, Crohn’s, Asthma, and Rheumatoid lung disease as a result. You might consider giving The Immune System Recovery Plan by Susan Blum MD a read. It has lots of great info that you can put into practice to get some relief whether or not you have an official diagnosis.

mas0415 | @mas0415 | Dec 12, 2023

Thank you to all that have replied. I have gotten a bit behind in responses but please know I appreciate all the feedback and support. As an update, I have an appointment with a rheumatologist at the end of February but have asked to be put on a cancellation list in the hopes of getting in sooner. I just returned from the eye doctor. I have been prescribed steroid drops for inflammation in my right eye. When asked what the likely cause was, he said maybe allergies? I asked if it could be caused by an autoimmune condition and he said certainly but he wasn’t going to speculate on that as it’s not his field. I am seeing my primary care physician on Friday and plan to ask for a dermatologist referral, but in the mean time…the mystery continues…

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