Sorry for not getting back to you sooner. Thank you for sharing with me, squirmin. Wow it sounds like you have really been through alot. I have only had the nero symptoms for about 8 months now, well i had one episode last July where my face and both arms got pins and needle, but it was mid Jan this year that neuro symptoms came on. Mine are nothing compared to yours, just mostly bothersome and dont usually keep me from going about my day. I think I atleast have youth on my side. Well its fading fast as i am 28 now
Sure Kell. And when you're done reading mine it would be a good idea to put neuro in the search box for the site & you will come up with lots of threads b/c we are, of course, not all the same. Eatmeat had some neuro issues too & I'm sure she will be on to tell you of hers.
And before I forget ---- if your family members are willing --- it would likely be easier for one of them who does NOT have rash & has NOT been on steroids to be tested. As I said before, those of us with dh test neg. on the blood more often than those celiacs who do not have dh.
First --- I'm 55 now & these things began I guess around 50 or 51. My neuro issues began with my hands & feet feeling like there were needles or the feeling you get when a limb falls asleep & when it begins feeling again you get those needle feelings. From there, I got what everyone (my hubs & friends) told me was carpal tunnel from being on the computer too much. My wrists & hands would get sooooooo painful & would sometimes swell up & become red as fire in places. It could get so bad I couldn't use my hand. Even something as light as a kleenex touching my hand would send me into screaming pain. I couldn't even hold a fork. My feet would get that way too. Thankfully I never had both feet going at the same time so I could hobble around on one foot. But I would sometimes have both hands at the same time. it was sheer hell. Try pulling your shorts down to pee ---- Arrrrrgggggghhhhhhh!!!!!!!!!!!!!!!!!!! These times would last anywhere from a day to 3 or 4 days & then it would just up & go away sometimes in the space of a few hours. No pain killers helped. Not Tylenol, Advil, or even opiate prescription pills. Nothing helped an iota. Heating pads didn't do it. Ice packs only would allow me to sleep when I got the place so freaking cold I was undoubtedly doing tissue damage to the skin b/c I got it so cold I went numb but I didn't care. It would feel like you had a broken bone with no meds --- that was the severity of the pain. Then it began affecting my lower legs below the knee & then my shoulders, & my hips --- ohhhhhhh, the hips --- they liked to do it both at the same time, & I began to get it in the back of my neck, my upper arms, from elbow to wrist but not the elbow or the wrist just in between, & then below/under my shoulder blades & between shoulder blades & also there & the back of my neck I got what felt like a toothed clamp feeling like battery cables are toothed & it felt like one of those was clamped on me. I drug more parts of me around than you can imagine. And it wasn't predictable. One thing would clear up & I might go a week or even two & then something else would fire up or maybe only a day or 1/2 day would pass before some other part of me fired up. I went to a spine specialist ortho & he ordered an MRI of all 3 sections of my spine plus something like a CT scan type thing of your bones where you drink this radioactive stuff & then they measure & take pictures of how it travels through your body & it glows on the monitor screen --- they did that I guess with & without contrast. Also a complete bone scan for bone loss. The spine specialist said I have DJD & arthritis in my shoulders, & I do have some spine problems --- he put it as "the jelly is squishing out of the donut". He said no PT or exercise or anything would be of any help. He wrote a script for epidurals & wanted me to go see this neuro specialist. I got the epidural & it helped but not enough so I got a second one & it made things much better. I never went to see the neuro guy b/c I was told the 1st test would take 8 hours --- well, that I would be there for a full 8 hours --- they do something then you go wait then they do something then you go wait etc.... & we had a lot going on in our lives right then & we ended up moving to the other end of the state a few months later before I had done the neuro guy. The spine specialist did seem to think most of my problems I was experiencing were neuro induced rather than SO much spine induced. He is a really good spine guy too. But I'm not too hot on docs. I've had some events earlier in my life which have led me not to trust docs too much. OH! And my right lower eyelid would drive me insane twitching!!!!!! For about 2 years.
Anyway, that was all in late 2010.
I did have another epidural up here in early Feb. of this year b/c I started to have some of those things happening again during 2011 & I was afraid it would all become too much again. BUT I will tell you that the signs I lived with have been steadily clearing up since going gluten-free. A lot of little signs that I used to have all the time, even after epidurals, have been going away. I'm not healed yet but I now know that a lot of the stuff I thought was caused by DJD was actually neuro from gluten. It remains to be seen just exactly how much is spine & how much is neuro & how much will ultimately heal but I keep remembering the spine doc & his face & I saw something in his face that told me better than words that he knew something else was going on in me & doing most of this stuff. I wish he would have been blunt & said so but you know docs --- they don't ever feel they need to give you explanations --- you're just supposed to blindly trust them & do what they say. And I had made that mistake before in my life when I went to 6 OB/GYN's over 4 years telling them my symptoms & was outright ignored & told I was fine only to end up in the ER getting 2 pints of blood one Sunday & a hysterectomy where a uterine fibroid that weighed 28 oz. was removed along with my uterus. That was 6 docs that failed me. I learned to only trust myself & my instincts.
I think I will start a new post to tell the full story bc I couldn't find any recent posts. I think I will put it in the pre-diagnosis, symptom catagory. Thanks again for all your help