After living with GBS for 5 years, I just found this site
September 30, 2015 at 3:28 pm
Hello everyone. I just found this site thanks to a link mentioned on http://www.scripps.org. I’ve been living with GBS since May 2010. My story is probably similar to the others here, numbness in both feet, then legs, then arms, and that tight band feeling around my chest and slight face numbness. ER for a few days while they run test trying to figure out what is causing it from Lyme’s to M.S.
After about 2 months, my legs were able to walk more and no longer numb, I was finally able to hold things in my hands without crushing them. I was so thankful my employer held my job for me while on disability for about 5 months. I was sent all over town trying to get a diagnosis. It was around the 2 month mark they finally said it was probably GBS.
I never did get any treatment other than physical therapy. I keep seeing people talk about the IV treatment and wonder if it would help. The past 5 years I have been alone and searching for possible treatments or a misdiagnosis. I greatly reduced my physical activity due to cardio weakens my muscles almost immediately. Walking/Stairs causes my diaphragm to weaken so I watch myself and rest a lot. My hands are still numb and tingly, so a lot of my art/hobbies have been removed from my desires. Sleeping now includes snoring and legs cramps, muscle spasms/cramps, foggy mind, and extreme tiredness control my life. Overall mood is depressed but I try to hide it as much as possible, watching comedies so I can laugh a lot.
I don’t know what to expect from this site, or if it can help. But I’m up for anything. I just a light at the end of the tunnel, or others to tell me they also had symptoms for 5 years but it finally receded more. Maybe there is additional treatment that can help with my bad days that’s also affordable. I honestly didn’t picture myself spilling my whole sob story in my first post. Sorry about that, it’s just always on my chest. Its not exactly the thing people want to hear when they see you and ask “How are you doing”.
Thanks for reading, and I plan on reading through the post here to see what other people talk about.
September 30, 2015 at 5:21 pm
Hi, Daurkin, welcome.
Most of us here had either IVIG, or plasmapheresis. Doesn’t cure GBS but stops its progression, reducing the potential damage. At least, that’s what I’ve been told.
All your residual symptoms sound typical, although after five years, I would have hoped they improved. Are you still engaging in physio?
The nerves need to be stimulated back into action, if possible. Right now, they can’t communicate with your muscles. I was told that in hospital but was also told that the damaged nerves would regrow rather than repair, so I’m not sure about that. The kinesiology/accupressure/chiro that I am currently getting (I’m 3 1/2 years) has not helped greatly yet but I think it will because my muscles are plenty sore after an appointment. To what degree, I can’t say, of course. I’ve only been going for the past month. If you have someone like that in your area, maybe look into it. Don’t expect an instant cure, though.
I’ve also started taking 2,000 mgs of Vitamin C daily – 1,000 morning and night. It helps heal cells, etc., so figure I can’t wrong there.
I have tried a couple of other things, i.e. Lecithin and ALA that others in this forum have tried but they didn’t seem to help me. Might be worth it to see if they work for you, though. Take a look through the GBS adult threads, see if the info there is helpful.
Try not to get too discouraged.
October 1, 2015 at 1:23 pm
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.
October 1, 2015 at 2:44 pm
It’s crazy that it took two months for a diagnosis. A typical case of ascending paralysis can be diagnosed as GBS in a day. The active phase of GBS lasts only a few weeks, so if you had GBS, what you have now are residuals from the nerve damage. Treatment to minimize nerve damage must be started early to be effective.
If you have CIDP, regular IvIg treatments can help.
Do you have a neurologist now?
October 2, 2015 at 12:35 pm
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?
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