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HELP!!! to prepare for new RH appt
Autoimmune Diseases | Last Active: Sep 2 8:35pm | Replies (10)Comment receiving replies
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
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@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!