HELP!!! to prepare for new RH appt

My doctor sent a video through the online portal where she introduces herself and explains the appointment. She seemed very nice.

She said we would discuss my concerns and symptoms. And, she would get to know me. This would last about an hour, Then I would have some tests, likely blood work and x-rays. (I’ve already done the labs as my neurologist ordered them previously so she’s have them available at my appointment.) They both are at Duke.

I actually typed a Summary of my autoimmune issues since my twenties. Plus, muscle issues, prior diagnosis, family history, and past medical procedures. I was going to give it to her, but I think I’ll just use it for reference. It’s pretty long and it might discourage her. Lol

One thing I read by someone who posted around here was to ask what symptoms should you report back to her after the appointment.

I have written down my top questions that are the most important to me.

@shelleyw
Have you ever seen a rheumatologist before? Write down a list of main symptoms troubling you now, current medications/treatments, previous diagnoses, previous labs/tests/imaging already done (would send ahead, if possible), family history, and most important questions you need to ask/get answered. Bring someone with you, if possible, to take notes and help you keep on track.

For your hand/fingers, did you injure yourself recently? Have you seen a neurologist and had a MRI of your cervical spine and EMG/nerve conduction testing of arm/hand nerves yet? This sounds like spinal cord/nerve compression/injury to me since it is only affecting your 2 fingers (unless there is an underlying disease affecting your peripheral nerves in hand). Were you ever diagnosed with carpal tunnel?

dlydailyhope,
Loved your advice. I can't tell if your questions are for me to ask myself or to answer to you? I am going out on a limb, and answer the questions to you. If you are willing, my answers might prompt you to ask me more questions, so I can get more effective help with the RH.
I am 65, my pSS, biopsy positive is how I got to RH. I was a Kaiser Permanente patient my entire adult life, just left because I turned 65. I was assigned an RH, but never met her.
My history of non RH is very long, do I bring it all up?
My husband will be there.
Hands/fingers: The pSS seems to have ignited my normal osteoarthritis, whole body. But this started after a very minor fall,on carpet, straight arm. The dropping fingers, all fingers, thumbs, wrists, elbows are all on a roller coaster like flares. All were X-ray and no fractures or breaks. Yes I have had MRI s of head down to bottom spine. Neurologist was a jerk about anything, he only did Botox for migraines. My cervical spine showed bone spurs and bulging discs back in 2007, these may have some relation to my 2 recreational accidents in 2005, but not all of the problems. My recent MRIs of entire spine, got these before I left Kaiser. Cervical is bad, loss of lordosis, etc, , problems down spine. No nerve tests. I have peripheral neuropathy everywhere for years and getting worse. No carpal tunnel, but feels kinda like it. Some portion of my elbows to fingers and knees are in compression wraps almost all the time. Why would the RH care about these? THANX, THANX, I really do appreciate your time and help. ShelleyW

@shelleyw
I am a 55 year old female with congenital spinal stenosis, degenerative disc disease, osteoarthritis in my spine, bone spurs, and loss of lordosis in my cervical spine. I also have small fiber and peripheral neuropathy.

I was diagnosed with cervical spondylotic myelopathy C5-C6 level (spinal cord compression injury) and had a couple falls which may have made this worse. I ended up getting ACDF surgery to relieve compression and stop the progression of spinal cord injury. My symptoms improved (no more daily headaches, neck/shoulder pain, arm/hand weakness, handwriting difficulties and dropping things, walking without feeling like I was wearing cement boots, and bladder control). My arms and hands still have some numbness/weakness and my EMGs showed I have bilateral “carpal tunnel” which is really tied to my cervical spinal cord injury.

I also had lumbar spine surgery L3-L5 to decompress and fuse those levels to relieve pain and numbness/weakness caused by neurogenic claudication. I had this surgery just on 8/2/2024.

Your history of spine issues and symptoms/MRIs plus fall on your straight arm/wrist/hand, etc. makes me think you would benefit from seeing an orthopedic spine specialist or neurosurgeon. Your pain sounds neurological to me. Arthritis may add to it but it sounds like your spine compression may be causing some of your symptoms.

I spent years going in circles with many different doctors/specialists, including neurologists and rheumatologists, and lots of bloodwork showing autoantibodies. I really didn’t get much help from them except for the idiopathic small fiber neuropathy diagnosis (unknown cause). My orthopedic spine specialist (3rd surgeon opinion) finally diagnosed me after 5 years of running around wasting time and money and symptoms getting worse. My surgeries have helped me because I had structural spine issues compressing only spinal cord/nerve roots/nerves. You may want to pursue this avenue if you end up not getting too much help from a rheumatologist.

Good luck getting answers and proper diagnosis!

@shelleyw
This article from the Autoimmune Association will give you an idea of how to prepare yourself for an appointment and the questions to ask. Don’t ask all of them! Just figure out which ones will help you the most. Some of the other sections are for later, right now you just want to get a diagnosis and a plan of care.
https://autoimmune.org/wp-content/uploads/2024/03/Question-Prompt-List-Autoimmune-Association-English.pdf
You have more than 2 months before your appointment, so that gives you lots of time to prepare. You might also look at some of the other discussions in this autoimmune group. There are others also talking about ‘getting a diagnosis . You may get more ideas. Since you said that your husband is also going, he should be prepared to ask questions and take notes, but let you do most of the talking. You’ll do just fine!
What one thing would you most like to find out at this meeting?

Shelley, the ring and little finger are controlled by the ulnar nerve. It can get compressed by swelling and it’s like carpal tunnel syndrome but on the outside of your hand, carpal tunnel affects thumb and first 3 fingers. Ulnar nerve can get compressed at wrist or elbow. An orthopedic hand specialist is the best dr to consult. An EMG will likely be ordered, and once the compression site is determined it may be possible to get improvement with a steroid injection by the hand specialist. I am just suggesting that this is a possibility. Previous posters covered well how to prepare for appointment. I hope it goes well!

slkanowitz,
Thanx for your response. I am aware of the ulnar and the radial nerve, elbow compression. I found it so interesting to see that this nerve affects these fingers and the other nerve affects other fingers. Unfortunately, I did see an orthopedic specialist (I had seen him before for bilateral hip pain due to congenital malformation of my femur heads, mine are more oval and they s/b round, to fit in the round hip socket) My chiropractor was the one to diagnose this. The first steroid injection in just one hip was magic, no pain for 2 yrs. The next one lasted about 7 months, the third and final lasted about three days. That was about 2 yrs ago. By then the X-ray showed significant decline, osteoarthritis and multiple bone spurs...he told me "I will never have bone spurs in my hips." Well, guess he ain't as smart as he said he was. He also said that it's really a good thing that the steroids don't work for me, because every time you get steroids, it steals a bit of bone density. My first DEXA in 2010, I was 50 then, my whole body was already in osteopenia. Now my hips are in osteoporosis Tonnis 2 , and the rest is on the cusp of the two and ravaged by osteoarthritis. So I'm gotten really creative with compression, exercises and ice.
Since nothing was fractured or broken, " you just need to rest it for a week or two, then it will be fine ". This is where I don't tell you how I really feel about this Dr., and I need to get another doctor.
😱OMG, how narcissistic, arrogant , ignorant our medical professionals have become.
Thanx for the EMG, I think it is a nerve test, I will learn about it before my appt. Thanx ShelleyW

May I suggest that you take someone with you? I mean, if you have someone that is super supportive, and understands what you are going through. I make my youngest daughter go with me, if I have to ask for certain things. Or if I am afraid I'll forget to mention certain requests, or questions. I give her the list that I want to make sure we cover, and it's her job to jump in, if I get too wordy, or go off on a tangent, etc. It's really changed my life to have my own ready made Advocate. I don't take her always, but for like what you are needing to do.

@thenazareneshul Your posting of 20 minutes ago is first rate!! Good on ya!

thenazareneshaul,
Thank you, I will definitely do that. I have a dedicated book now for just medical. I do have my hubby, he now goes into every appt, I might forget what was said, by the time I get to the waiting room. Old and breaking down body and brain....this sucks 🥵😱