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Unknown Disorder/Disease - Chest and Neck Issues

Brain & Nervous System | Last Active: May 14 4:42pm | Replies (18)
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@dlydailyhope

@bigscraps
I would further explore what is going on in your cervical spine.

Since you are hypermobile, you may be having functional compression of your spinal cord causing many of your symptoms during “flares.” You may need to see several orthopedic spine specialists for 2nd and 3rd opinions. You may need a functional MRI (fMRI) of your cervical spine to show how different positions of your head/neck impacts your spinal cord.

Did your neurologist do EMGs/nerve conduction studies of your upper and lower limbs? Did they do a skin punch biopsy of your thigh/calf/ankle to test for small fiber neuropathy?

Do you notice any difference in your hand grip or handwriting? Do you ever drop things or notice it is harder to open jars? Does it seem harder to lift things than usual or button shirts? Do you notice a difference in bladder/bowel control? Do your legs feel heavier/slower when you walk?

What levels of your cervical spine show degeneration (c5-c6 or c6-c7, etc.). Did you ever have a car accident or concussion that may have injured your neck? Did your orthopedic spine specialist test your reflexes, watch you walk, review all symptoms and MRIs, and assess you for degenerative cervical myelopathy (spinal cord flattening/compression injury). I have this and was misdiagnosed for over 5 years until my 4th orthopedic spine specialist diagnosed me properly and fully listened to all symptoms, asked me lots of questions to narrow down to cervical myelopathy which requires urgent ACDF surgery.

1. https://www.orthobullets.com/spine/2031/cervical-myelopathy
2. https://www.ncbi.nlm.nih.gov/books/NBK482312/
3. https://spinehealth.org/article/cervical-myelopathy-explained/
4. https://orthoinfo.aaos.org/en/diseases--conditions/cervical-spondylotic-myelopathy-spinal-cord-compression/

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Replies to "@bigscraps I would further explore what is going on in your cervical spine. Since you are..."
JacobG | @bigscraps | May 14 1:31pm

A lot to go through on this one, but I think I can answer all of it. Mild broad disc protrusions and a minor shift of C6-C7 to the right is what the report said there.

I actually asked for a functional MRI of the cervical spine and my neurologist stated I was too young to have one done, and that I didn't need it at all. She has never ordered any studies other than a slee study. My sports medicine doctor did an EMG down both arms a few months after everything started and there was zero loss of signal. Could be more now, but back then it was fine. I also asked about a muscle biopsy or skin biopsy for the chest or likewise and she turned me down there as well.

I have noticed that my grip feels a little weaker, but if I mimick drumming or actually try to play the drums, I am not throwing my sticks, so my grip seems fine. My handwriting has always been atrocious but it hasn't changed from what I can tell. My legs feel fine, other than after Physical Therapy which leaves them sore for 1-3 days later (deadlift to strengthen the core). I haven't noticed any difference, although my physical therapist did suggest that it is because my body found alternative means to keep me lifting things which hurt my upper back and posture.

I also just fired my Neurologist because I was 2 minutes late to the online appointment (notice she has been consistently 6 minutes late herself but was there in time for one), and I was late due to my therapist wanting me to read a few articles. She literally yelled at me for being late and disrespectful of her time and others. Then when I asked her what is her plan she got irritated because I told her that I needed to see my ENT of she believes I have sleep apnea or not because my jaw has been messed up for a while now and they just fixed the joint a little so I need to be careful about any constant pressure on the jaw. She then stated she never wanted to order the EEG but only did so because I asked for it when I had flashing lights in my eye sight (and still do for certain movements of the eyes). Basically, she was tired that I had other specialists because my cardiologist told me not to stop my blood pressure medication and she wanted me to. He trump's her there as I've been with him for 6-7 years now and he does care, but he also can be very busy, but he's saved my fathers life twice now. She tried to override the orthopedic surgeon saying it was a sternocleidomastoid issue when he believes it's a cervical spine to scapular area issue with muscle weakness. She never ordered any test outside of a sleep apnea test, and when there were discrepancies in the report got utterly defensive and suggested the test was fine (even through their at home sleep doctor team told me I needed a professional rest done and not the at home), and got upset when the team she recommended reviewed it and suggested something else. So, she is no longer my neurologist and I'm in the process of finding a new one. I do have a second opinion set coming for my cardiologist to be safe, and a new Rheumatologist as my other one just insists its my weight that is an issue.

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