Undiagnosed Autoimmune Disease

SFB was an initial diagnosis with an underlying autoimmune disease. Skin test ruled out SBF
Neurelogist also thought early stage Parkinson. Almost all of the more obvious autoimmune have been ruled out. No one wants to take a deeper dive to find cause of ear pain or chills. That is why I am looking into the Undiagnosed Disease Network.

I’m not sure what mast cell activation syndrome is, but my daughter has an autoimmune condition as well and has multiple anaphylactic allergies - she is also allergic to her own sweat so has to be careful not to break out in a sweat which can trigger hives (her hives can be triggered by anxiety and stress too), which in turn triggers anaphylaxis. She cannot even be in the same room with latex (e.g., balloons), strawberries, kiwis or pineapples. On the whole she literally walks an allergy landmine. She needs to carry two Epi Pens with her at all times.

She has been taking Xolair injections once a month in a clinic setting for about four years now. It has helped with her hives. Also, she was allergic to almonds and coconut among her long list of allergies, but after a few Xolair injections she has been able to eat first almonds, and then coconut (she was given small portions at the clinic, under observation). She still is allergic to other tree nuts. It is hoped that in time she will be able to tolerate other items on her long list.

Xolair injections are a work in progress for her, but they definitely are helping. Fortunately for her, her health plan from her workplace covers the injections.

So you had the punch biopsy and it was negative? As it has a high sensitivity/specifity for the disease it probaly isn't it. But your doc knows more than I do.

@dstone501957
I’m sorry you are suffering. I am in my mid 50s and can relate with chronic pain, weakness, etc.

You may want to get a 2nd opinion from a neurosurgeon if you had your surgery done by an orthopedic spine surgeon. My ACDF cervical surgery on C5-C6 and C6-C7 was done by an orthopedic surgeon.

I also have cervical myelopathy spinal cord compression injury like you. How long did you have symptoms prior to your surgery and what were your pre-surgery symptoms? I was misdiagnosed for over 5 years and have some permanent injury to my spinal cord and some residual weakness in shoulders/arms due to long term flattening compression injury of my spinal cord. Before my surgeries in 2022 (C5-C6) and C6-C7 (2025), I had daily headaches, tinnitus, balance issues, neck/shoulder pain, arm/hand weakness, leg heaviness (felt like wearing cement boots when walking) and bladder control issues. I kept dropping things and my handwriting was noticeably worse. Many symptoms improved after my surgeries.

It seems that something injured your vocal cord prior to your surgery and it would be good to know what caused the paralysis. You should have your other vocal cord checked/tested by the ENT to ensure there is a baseline and ongoing monitoring to see if you can narrow down the cause of the paralysis and prevent that happening to your other vocal cord. If the surgeon knew you had a pre-surgery vocal cord paralysis, a last minute change to posterior surgical approach wouldn’t have been necessary. The surgeon should have prepared you for posterior surgery which is much more painful than ACDF due to cutting muscles (I had lumbar posterior open surgery L3-L5 in 2024 and can relate with the extreme pain). I’m suspicious about this surgeon. They should not dismiss or disregard your pain and upper/lower body weakness!

You really should get an urgent MRI of your brain and cervical spine to make sure you do not have any issues with your surgery or new compression of spinal cord/nerve roots, CSF leak, or inflammation. This would not show up on X-ray. Your surgical notes indicate there was a tear in your dura which can leak cerebral spinal fluid. You need to know if the tear of the dura occurred during the surgery or if the tear was due to compression and friction of dura by a bone spur/osteophyte (what caused the tear and need for patch repair). This could be behind your symptoms. If you need to go to the ER to get timely attention to your concerning symptoms, you should do this. I would do this if ai was you. Waiting to get in to see a new neurosurgeon will take too long to see if you have a CSF leak putting pressure on your spinal cord/nerve roots/base of brain.

Thank you for letting me know that the Xolair is helping your daughter with her allergies and autoimmune disease. I hope she continues to improve 🙏I hope my insurance approves it!

My initial diagnosis was idiopathic Small Fiber Neuropathy with an undetermined underlying autoimmune disease. Too make it even more interesting, the Neurologist tossed in early stage Parkinson. My favorite medical term "idiopathic" fancy way of saying we have no clue. I do think I have an autoimmune due to the constant severe chills and I believe the dull burning ear pain is related. The skin biopsy SYN-ONE CND Life Sciences is a proprietary skin biopsy that can also detect Parkinson (ruled out for me) and I was also interested in Lewey Body because my mother died from it. It was not even diagnosed properly until 6 weeks prior to her death. The SYN-ONE has a 95% accuracy, all my results were normal. Did you get this one?

Procedure note from the Orthopedic Surgeon: "It was noted that we had what appeared to be spinal fluid coming from the upper right most area at C4-5 from the dura." He nicked it during surgery.

My symptoms prior to the surgery were not too bad. I did start to have some balance issues and weakness in the arms. I had imaging done in early October 2024 that one of the impressions was described as "extremely severe" which got the ball rolling for the November 20. The Orthopedic Surgeon had ordered a CT w/o Contrast on October 28. This is the imaging where the impression noted the paralyzed left vocal cord. I was contacted and told I would need to be cleared by an ENT prior to the November 20 surgery proceeding, I was fortunate to get in to see an ENT that specialized in the throat. he cleared me for anterior, but the Orthopedic Surgeon ended up being conservative did not was to risk damage to the right vocal cord.

I am retired, since 1954. I opened a collectible toy store. between several hundred regulars I always had one an expert on what was going on with me. The reason I mention this, one of my regulars was a career postal employee, the surgery I had is very common with postal workers. He had it done by a neurosurgeon. He went on to tell me postal workers he knew that had the procedure done by neurosurgeon very seldom had complications and those that had an orthopedic surgeon tended to always have complications.

Have you been tested for Celiac Disease? It can be silent (no GI symptoms) and can cause a ton of other symptoms. It’s not uncommon to have another autoimmune disease in addition to Celiac Disease. I was silent celiac and had small fiber neuropathy, osteoporosis, joint pain, ataxia, allergies, etc. I’m now gluten free. The ataxia disappeared. I still have the SFN and osteoporosis. I take Dupixent injections for the asthma and sinus issues. Might ask your doctor is you could have a blood panel to test for it. Just a thought.