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6 yrs ago I had sprained my left ankle it took a while to heel. Than one day my left foot started vibrating. Than as days went on I started feeling las if water was dripping on my leg. I couldn’t stand to feel the blanket on my feet. Started having crawling, prickly, shocking and buzzing pain. It travel up to my knee than went to my other foot and knee. Eventually it has move to my buttocks, hands, moving up my body. I’ve seen several doctors, had blood test, skin biopsy and MRI in 2020. Surgeon said I had a herniated disc. Had surgery it didn’t help. I’m losing muscle tone. Back to neurologist for more of the same test. I’m on 50mg of Lyrica 2x daily. 2mg of LDN at night. I can’t tolerate meds well that’s why I’m only on 100mg of Lyrica. This has altered my life, I was active in good health and can’t afford to lose weight. Has anyone experienced these symptoms? I feel like doctors are giving up on me. I don’t have Sjogrens or fibromyalgia.
Replies to "6 yrs ago I had sprained my left ankle it took a while to heel. Than..."
No, after I have another skin biopsy than my neurologist will mostly send me to a rheumatologist. I’ve seen one before but he was rude so I’m not going back to him. I hope I don’t have Gillian Barre syndrome because I too the Covid shot and they ask me if I had it, I don’t know why they ask. I also hope the LDN medication isn’t affecting my blood test.
I can certainly understand your frustration at not having a diagnosis. All of my symptoms pointed to a GI problem, but after months of being very sick, it was found to be a brain disease. And then, the doctors didn’t know what it was or how to treat it. :-(. We finally found a doctor in Denver and I’m doing OK. Like your name says, ‘never give up’! I did find this article from National Institutes of Health that you may find of interest. It covers all aspects of rare diseases.
https://rarediseases.info.nih.gov/guides/pages/24/tips-for-the-undiagnosed
Unfortunately, most doctors weren’t educated in autoimmune diseases until recently. You have to be your own advocate! Read all the discussions about neuropathy and see what you can learn. It’s a tough job. Let me know if i can help with more articles! Will you let me know how the rheumatology appointment goes ?
Hi @notgivingup17, I'm sorry to hear that the search for answers continues. You'll notice that I moved the message you posted today to the discussion you started earlier to have your story all in one place, so to speak. I've also added the discussion to the Neuropathy group.
Have you been diagnosed with neuropathy? You said you are losing muscle tone. Are you able to engage in physical activity like walking or light weight lifting?
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Have they ruled out with the tests Guillain-Barre syndrome ?