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I don’t have anything now, just vitamins and a doctor that sort of knows about it. I’d love to know how to find a doctor in the Denver area that specializes in it.
When I first got it, the first week was spent testing me for a stroke, then spinal neck injury due to previous injury, then MS, then RA, and THEN after changing doctors, they sent me to get a spinal tap. It was weeks afterwards so the test was inconclusive because there was enough time for the white blood cells to receded from the spin but the count was still high. They did the test where they shock my nerves to see if it reacts quickly and readings came back good even though they could see something is not right. Then sent me to another neurologist (again this is about 3 months in) and he looked at the testing and symptoms and just said you have GBS, not much we can do at this time it’s too far in.
I’ll take a look at CIDP to see how it’s symptoms match up. How do I find better doctors?
For me, it comes and goes in my thighs if I’m walking a lot or using my legs in some light cardio. But it’s more like spotty patches versus full on starting all over again.
5 years, I’ve just dealt with having bad days. Lots of them. If my body or hands get too painful, I’ll take a two days off from work and put myself on bed rest, including no video games. That really seems to help.
I only had physical therapy the first few month just to focus on my legs until they felt less painful. I also used acupuncture during the first year. It was bi weekly and for about 3-4 months until the cost started bothering me. It seemed to help give me energy for about a week, and then the second week I would be drained again.
My doctor did some vitamin tests on me when I said I was always sleepy. Found I had a vitamin D deficiency and told me to take supplements. That helps some-days. I’ve found Vit B-12, D, Zinc seem to help just not 100%. Based on your reply I bought some Vit C and will start that today. I’m interested if it helps too.
I live in Colorado and the cold will cause my hands to cramp up in the pinky or thumb. I love winter, but it’s the most painful.
Hmmm I don’t think I have CIDP just GBS, and I don’t take IVIG. But I’ve had that buzzing sensation on parts of my body since I was originally sick. It feels like my phone is vibrating but my phone isn’t on me. I usually get it in my hip or knee or my neck.
Is this IVIG treatment usually covered by Insurance or is it a huge expense if I were to go down that road. My doctor hasn’t talked about it but he doesn’t really specialize in GBS to begin with. I’ve had it for over 5 years and my upper body is permanently numb/tingle and cardio kills my breathing so I limit it to just walking.
I also had the strange feeling of walking on marbles or pockets of air. It went away first but after about 3-5 weeks for me. I would have moments where it felt like it was getting better and then it was just kidding and came back. It seemed to start with my legs and up my body, then when it was going away it used the same path.
The first few months were hard on my mind. It played a lot of tricks on me. If it was dark or I couldn’t see my limbs, my mind would make me think they are positioned in a way they were not. Sometimes when I was resting, it would make me feel like I was all twisted, but when I look down my body was just laying there like normal.
I just wish I was one of the stories that I got better after a few months. After 5 years, I still have the chest tightening feeling, muscle weakness when being active, and numbness in my arms and hands.
Peter