Undiagnosed severe pain

Hello @notgivingup17 and welcome to Mayo Clinic Connect. It sounds like you've had this pain slowly traveling north since the onset in 2017 after your ankle sprain. I am wondering what correlation your doctor may have made between your ankle sprain, herniated disk and your overall pain you are experiencing?

Well I sprained my ankle I think it was late 2016 saw my primary because it wasn’t healing at that time it just would swell once in a while. I ask to go to physical therapy but he wouldn’t send me, he said I would need to be in a car accident. It gradually worsen through out the day. I started feeling weird sensation like water dripping on my calf, the blanket on my feet bothered me and eventually crawling sensation. Finally I went to a orthopedic/ spine doctor had a MRI done, he said I had a bulging disc L4-L5 than said I needed a EMG and PT. I was afraid of the EMG from hearing other people. I got a 2nd opinion from a surgeon he said I should try PT and maybe a chiropractor. I tried PT it didn’t help the pain spread to my other foot and calf and sometimes in my hands. I was still trying to exercise. After that my buttocks muscles got so tight they wouldn’t relax. Than the pain went to that area but with lots of prickling and muscle pain. By this time it was 2018 I had the EMG done it was negative. Went to several chiropractors and start seeing a pain doctor. So far no meds or chiropractor worked for me. In 2019 I saw another surgeon he sent me to a musculoskeletal neurologist he did a lot a of blood test and small fiber skin biopsy all negative. My surgeon did another MRI of my whole spine and this time I had a herniated disc L5-S1 and problem in my cervical which he said he would keep an eye on my cervical spine since I’m having more buttocks, legs and feet problems I should have the herniated disk surgery. I told both doctors it all started with my ankle, but they didn’t seem concerned about it. So I had spine surgery but I don’t feel much better and it’s spreading. Everytime I tell them I feel it in my arms or going up my sides the surgeon said I have issues with my neck. I did have a whiplash in 2007 that I never got treatment for. I’ve been researching and I’m praying it’s not CRPS. Sorry for the long story. Thanks for responding.

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.

Have they ruled out with the tests Guillain-Barre syndrome ?

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.

It’s so frustrating having a unexplained symptoms and no answers, isn’t it? I’m so sorry you’re having to go through all of this. At least you can be fairly certain that your symptoms aren’t related to the Guillain-Barré syndrome. It progresses rather quickly once the symptoms begin.
https://www.mayoclinic.org/diseases-conditions/guillain-barre-syndrome/symptoms-causes/syc-20362793
The reason the administrator if the vaccine asked if you’d had GB is that occasionally the Covid vaccine or any vaccine can trigger an immune response in people who had a preexisting neurological diagnosis. I had this happen and my symptoms disappeared in 2 weeks without treatment.

Being active in the discussions with our neuropathy group I hope it gives you some solace to know you’re not alone. Good luck with your doctor’s appointment coming up. I hope your next doctor isn’t rude to you! There’s no reason to tolerate that! Did you let them know why you won’t be returning?

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?

When I told them how it started it’s like they aren’t listening. I’m so frustrated because the pain is spreading and they look confused. I only had the surgery because my husband and I saw the herniated disc on the MRI and my sister had back surgery and she said it sounds like it’s my back. EMG showed low back problems because when the doctor stuck the needle in my low back it caused spasms. I had a gut feeling the surgery wasn’t going to help and it didn’t. If I wasn’t taking LDN and Lyrica I wouldn’t be able to walk. I will have another biopsy for SFN in February. All my blood test from my neurologist are negative. It’s spreading and by the time they order another test or see another specialist several months will have gone by. Anyone have any advice?

No I just told my neurologist that I will not go back to that rheumatologist because he just looked in my mouth and said you don’t have Sjogrens in a rude manner.