I'm never how I used to be, but I do have a couple of good days a month. Also, each time I relapse it affects me slightly differently - my walking always to some degree. I've recently had 2 relapses which affected my arms/hands/shoulders/neck/face/scalp the most so, for the first time since Feb I actually managed to get out and about a bit. It was a bit embarassing talking to people as my face got twitchy and I felt like I wasn't in control of my facial muscles - it hurt too! Never thought I'd get face ache from talking! But at least I got out of the house.Eating was hard going too, a few chews and my jaw was knackered. Plus my hands/arms got tired cutting my food.
I'm constantly tingly, but just before I relapse it gets very intense in patches. I can actually feel it getting worse or better as it's quite slow moving.
The longer it's gone on the closer the relapses are getting, there's a definite improvement for about 2 days to a week in between but I've had to reassess my life and now I only do what I can when I can.
I've seen 4 GP's, an emergency doc, 2 hospital docs, a neurophysiotherapist, an occupational therapist and a neurologist all with varying degrees of sympathy/advice. I have only been prescribed Co-codamol for the pain in my tendons/muscles and some diazepam for the twitching and shaking - does take the edge off the shaking muscles when I walk and supresses a bit of the twitching, but doesn't do much else.
I've looked up so much online that I think I could take a doctor's exam and pass! My symptoms don't fit with the criteria of GBS, although I have looked into the chronic form CIDP and I'm going to mention that to the new neurologist as the symptoms are very similar to what's going on with me - and actually to a lot of you on here. My reflexes are fine though and I can 'feel' in all the tingly areas and that's what's throwing all the doctors I think.
Have you thought of creating a group on Facebook? You can have discussions on there and only have verified members. It's easy to delete posts too.
It would be really great if anyone from the UK could keep in touch with eachother, not only for eachother but also perhaps our doctors could collaborate to find out what's happened/happening to us.
Strength in numbers as they say!
Hi just a quick note just seen you are from Gwent. I am from Powys although I dont live there now
Glad you found this site. You do seem to have all the same symptoms as all of us although it sounds as if you have all of the symptoms all of the time. Now you have found this site you will find it soooo helpfull. Although there have been some posts just lately that you will not be aware of that have been c--p. However some of us are trying to develop something safer and you will see as new posts come in from those people and just follow instructions. I dont know that much about it and will wait like yourself but still keep posting here for now
This site has been a life saver for me and for the other responsible posts I was vaccinated 27th Nov and still have all the symptoms but they have lessened but as you say they return and that is frightening but we know it goes again for a while.
We are all improving but what the H--l is happening to us!!
Anyway good to hear from you I am from the UK it sounds as if you might be from the USA most posts are and Canada
I just found this page and I'm so grateful!
I got the Swine Flu vaccine and the seasonal flu vaccine last December 1st (2009). Within a few hours I felt tingly in my face and when my right arm (where I was injected with Swine Flu jab) got tingly a day or two later I put it down to inflammation. I was really quite sore forom the jab for about 5 days. Anyway, I went to see my GP and she was baffled. Had to keep going back to check progression as she thought it may be shingles or Bell's Palsy. Needless to say it was neither and the tingling continues to spread. Had bloods done in January - all normal results. I was getting very fatigued and had to stop working as a massage therapist - work which required me to be very physical and to have stamina ( I often saw a number of clients during the day), especially when doing sports massage. The GP referred me to neurologist, although I really do think she thought I had anxiety as quite a few docs I've seen since have looked at my notes and made comments and asked questions about my life!
Feb 19th I woke and my arm felt really strange. The tingling was all over my body by now but this feeling was completely different - like I'd had my arm removed during the night and someone elses sewn back on. Went back to different GP and got examined, not really interested though. By that night my right leg also felt odd. Saw another GP and he referred me to neurologist as an emergency. 10 days later I couldn't walk, get up from sitting, dress myself, turn over in bed, cut my food, chew properly, brush my teeth or wash my own hair properly! The list is endless! I also had burning sensations in my feet or more often than not very cold feet and hands which I can't seem to get warm no matter what I wear or do! I have twitching, sometimes 1,000's an hour which is incredibly frustrating, I get spasms, especially in my abdomen, which make it hard to breathe, my heartbeat goes very fast/irregular, I get problems going to the loo (both) and I'm always tired.
I saw the neurologist at the end of March, he just said it was an allergic reaction. By that time I was a lot better and although I still had some problems mostly with my right leg and abdomen, I was so glad to be getting better that I didn't question his diagnosis. Stupid really because I usually question everything!
By April 10th I'd relapsed. Everything affected again. Phoned neurologist - not interested, I did pull him on a few points but to no avail! I had to fight for further tests and a war ensued between my GP (a new one I'm really pleased with!) and the Neurologist. I managed to get some Nerve conduction studies - results normal. I've recently had full blood tests done - about 12-13 in all I think, all normal. I'm waiting to see a different neurologist so hopefully he'll be able to order more specialised tests. So far I've had the initial bout of whatever this is in Feb and SIX relapses. I've had an occupational therapist to my house and she's got me things to help me out - toilet seats, extra stair rail, bath rails, shower seat, bed rail to help me turn over in bed. I'm seeing a neurophysiotherapist who has given me exercises to keep my strength between relapses. Not sure how much it'll help but I'm willing to do watever it takes.
My life has changed dramatically! I've started relapsing every 4 weeks, I'm not affected so badly as the 1st bout thank god, but every time is different and brings it's own hurdles. I mostly have problems with my legs, arms and abdomen, but it affects everything from my scalp to my toes. When my abdomen is affected it's bloody awful! You wouldn't believe what them muscles do until you are without them!
I don't get out so much, it's too physically demanding most days. I struggle to keep up with my husband, kids and grandson. I'm only 36 but I feel like a 96 yr old most days. Everything has to be planned around this 'thing' and I can't always do the things I promise.
I've been on an emotional rollercoaster for months, but I'm keeping positive, I just have a few days now and again to grieve for my lost life! Then I pick myself up and get on with it all again. Moping about aint gonna help me!
Anyway, as much as I'm sorry that you lot are affected, I'm also thankful that I'm not alone.
I've got loads of symptoms and problems which number too many to put all at once, but hopefully you get the drift.
My thoughts are with you all,
This forum is super important to me. When I really need a friend you guys are here!! Without this forum I am not sure where I would be mentally. I know this reaction has taken a toll on me mentally but without you guys I think I would have gone completely crazy. For the life of me I can't figure out how we can have some good days and then out of nowhere a crazy symptom occur after a year of having the vaccine. If our nerves were just irritated why after a year do we have a new symptom that we have not experienced? Is our immune system still messed up? When do you think our bodies will fix itself? Please keep this forum going I am not ready to deal with this alone!!! Take care, Julie
So you haven't had any alcohol.. how are you feeling at this point?? I went for nearly 4 months without a drop and I still was not healed, then I said 'to heck with it' and decided to have a little bit occassionally, then gradually to having a little bit more... I really don't know for sure if it has an effect or not.. alcohol definitely helps me to ignore what's going on while I'm drunk, lol..., but I don't know if it's causing any long term benefits or harm (I've been drinking primarily red wine when I do drink- so it is possible it has some beneficial effects)... I really can't tell for sure...