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@supernat10,
I can relate with your experience and symptoms.
I am in the process now of getting a new neurologist to test me for MS and CIDP. I have had vision blurriness, brain fog, cough, trouble breathing deep/singing at church, chronic extreme fatigue, full body pain at different times, arm/hand/leg/feet pain/weakness/numbness and pins/needles, muscle spasms/twitches, dizziness and balance issues, tinnitus, memory issues (feel like I am getting dementia at 54 years old), difficulty speaking/finding words and swallowing at times, etc.
I had pressure and pain around my chest (MS hug?). I have gastritis and esophagitis and take omeprazole and recently had a HIDA scan which showed my gallbladder stopped functioning (need to have it removed because it causes pain near my liver/gallbladder which runs across my rib cage after eating). Have you had your liver/gallbladder checked? It could be tied to autonomic nerve dysfunction which can affect heart, lungs and digestion. Have you had a small fiber neuropathy punch biopsy done to see if that may be causing some of your problems?
Good luck!
Replies to "@supernat10, I can relate with your experience and symptoms. I am in the process now of..."
Hi @dlydia I appreciate your input. How did your gallbladder appointment go? My primary care doctor diagnosed me with Fibro a long time ago, but I've never felt like it was accurate based on my symptoms, but I totally understand why she did, and I'm not ruling it out. For one, my pains typically start and stay in the same place (several key points throughout my body, but always the same spots). In my eyes, the diagnosis was divergence insufficiency, and I was told it was neurological, there's no physical reason they could find. Even had an MRI, so not even sure what caused it.
Another reason I don't suspect Fibro is that I get positive ANA high values (1:640 back in 2013 when this started, 1:80 back in 2020 but it was well after my episode ended, and 1:320 today). I know ANA is not always accurate, but it does go up for me when I'm going through an episode. My rhemy from 2013 thought I had lupus, because my back felt like it was on fire when I was walk out into the sunlight (with a long sleeve shirt on), among my many other symptoms and ANA positivity. But he wouldn't diagnose me with it formally. My most recent symptoms are so much more aligned with MS than Lupus. The only other odd bloodtest result is my iron supplies being nearly out of range (1 point from minimum). I just bought the most extensive liver and gallbladder tests I could find, and all was in range. But I will still discuss with my gastro. My CRP value was actually 0.6, which made me happy, because I was really concered these pains were cardiovascular, due to them throbbing with my heart rate and being in my chest, neck, and head. Score 1 win, I'll take it.
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@dlydailyhope thank you so much for sharing. This makes me feel like I'm not alone in this, and I hope the same for you. I will talk with my gastro next month about the HIDA scan. I have had liver workups in the past that were basic and normal, not sure about my gallbladder. I just ordered an extensive liver/gallbladder test online though, which will break the bank, but I feel like I have to look out for myself at this point. I have not had a fiber punch done, will discuss that with my rheumy when I find one. The last one I went to told me everything was from sitting wrong on my couch while working on my laptop. I stopped doing that though, and unsurprisingly had no improvement. My primary thinks I have fibro, and has for a long time, but I'm not convinced. Most of my pains center around my gastric system. Anyway, thanks for writing, and keep me up-to-date on how you're doing, and I'll do the same!