Yes, you are right..this is a 'support forum'...So that is why people like me do not belong here..
The only reason it seemed like I was attacking forum members was because so many have 'absolute blind faith' that the medical system has everyones best interest at heart. (Collateral damage does not count..) tell that to the families..
Ultimately, blame can not be passed. Only YOU are responsible for whatever good or bad happens in your life. Trust anyone/anything at your own risk.
I too, wish nothing but the best for every one of you.
I have been feeling very good lately. But I do have constant anxiety with thoughts of how long this is going to last. I know it won’t be for long, so I am really trying to enjoy it now. It such a shame that I can’t even “fully” enjoy my good days because of my “when will it end and the bad days start again” thinking.
BTW – I started therapy a couple of weeks ago. So far I can’t really tell if it’s working, we talk about everything from my reaction to family. I can definitely tell you that it feels great to vent and not be judged. I will keep you all posted on how it goes.
Hope everyone else is also having a stretch of good days as well. Jackie
So pleased you are feeling much better. I too have good days and wait for the bad ones to come.Yesterday I felt this overwhelming tiredness that just appears.
When you say you feel good are all the symptoms gone or are they in the background? I think I too am just plain frightened!!
Jackie and Chris: It seems to me that I had that phase as well and it seems to me that it is a phase just before you begin to 'see' and 'feel' better. It was at that time that the reaction itself was 'doing its thing' but my anxiety level was higher...interesting, huh?
I think in some ways we are all gaining our confidence back - in our bodies, in our physical strength, and while there are still symptoms, they are somewhat bearable on the good days. The bad days are more anxiety based with symptoms like buzzing and numbness etc, I get the 'I have overworked' feeling and need to lie down!
PFH: To answer your question from last post: yes I had terrible neurological symotms for months and was bed ridden due to feeling so systemically 'ill' I am still traumatized by the inital 4 to 5 months post vacc - never in my life have I been so ill...numb, tingly, head to toe neuro symptoms and physical symptoms...I still have numb footprints (like if I was walking on the beach) and still have other tingly, numb, painful, twitchy etc etc etc...plus all the other digestive issues...
I think therapy is a great idea - I am a big fan. If ANYTHING helps get through this...do it.
I am doing OK physically - been stretching alot cause if I don't I get super stiff...taking it all very slowly. Work is busy as h*ll and somedays I sit at my desk and feel the tremor-y tingles and numbness...vibrating and tingling.Oy.
Still pluggin away within my personal graph, grasping, climbing, clutching onto a root, a branch, loosing my footing, regaining my balance, don't look down, keep looking up...I see the top....climb, climb, climb...
Thanks for the feedback on counselling...still pondering that. It would have to be the right counsellor obviously since some can be good/some inadequate. Interesting stuff about Dr. Moulder, Cathy. My GP believes that my immune system over-reacted and attacked my peripheral nerves, which sounds similar to Dr. Moulder's theories about vaccines. I will have to look him up.
Well today is sunny so I better enjoying it while it lasts. Sidenote: I started a new position at work, I noticed about a week later that the tingling came back after not having it for a few months...very disappointed (and slightly freaked). Obviously, the stress of a new position triggered a nervous response. It has edged off some the last two weeks, but it does make me wonder if this will be an ongoing pattern. I guess I will just have to wait and see!
Take care, enjoy the weekend.
Hi everyone! I really need some feedback on this one. I went to the UCLA neurologist yesterday and did not hear what I wanted to hear. Can you all please refresh my memory about doctors saying how long it takes for our nerves to heal? Thanks everyone because I shed quite a few tears last night because of this. Julie
Hi Well I was under the impression it is the peripheral system and it took up to 2 years to heal. After that I suppose we would be left with what we have.
Was it how he put it to you that was so upsetting? How come the Central system got involved and is it involved?
I dont know what to say I hope you come back and post soon.
I've been lurking here since I found the site. Still twitching/tingling... I found this other site that has some good discussions about vaccine reactions http://hubpages.com/hub/H1N1Side-Effects-After-The-Vaccination. I hope everyone starts feeling better real soon. It's easy to let fear take over. For me this has been a learning experience. We should all realize there are consequences for our decisions, whether good or bad. We all choose the shot to protect ourselves, remember that. This has also been a religious experience for me. I realize the importance now of making the right decisions in my life. I'm not perfect, none of us are, but we can all walk away from this a better person.
Cathy, I wanted to thank you. You have been so helpful and uplifting for many on this forum. You are truly a wonderful person!
I was told yesterday that sometimes post infectious reactions like this may not completely go away and that the nerves might not be able to completely regenerate. But she also said don't give up yet because it can take up to a couple of years to keep seeing improvement. I just felt like I had been slapped in the face with my hopes just wiped away. I was asking about the peripheral nervous system as opposed to the central because everything I have read says that the peripheral can regenerate but not usually in the central. Please if anyone can help with this I would so appreciate it. Thanks, Julie
Julie Well I was told It takes a couple of years to improve and then we are left with anything left over but we will see more improvement in this last year. Or so Ive been told!! Was the Neurologist helpfull with any questions for you or was it all like that. Somewhere on this site it said they took about 6yrs to get better after a tetanus jab I think so people do keep improving
I think it hits us harder if we are down with a bad dose at the time. I have been not too good these last few days and prickling and tired and my tongue sore. that makes everything look worse.
The central nervous system I thought was involved with GBS and being paralised.I know someone with that and they didnt fully recover though.
I dont know what to make of it all really. Did she say about our immune systems and getting colds and flu and getting this thing all over again?
When we see any doctors it seems to open up another can of worms!
I wish everything would become clear. Its a pity we didnt have a doctor with these problems on this site
Mixed up and fed up and hope you are not so down best wishes Chris
My nuro said it “could” take a long time to go away, but he never actually said it will “totally” go away, now you have me questioning it too. I will have to ask him the next time I see him. He did however say that this should be the extent of my symptoms and that I should not experience anything worse. He definitely said it was PN, and never even mentioned anything about it being the central nerve system.
I would think that since we all do have “good” days the nerves are regenerating; otherwise wouldn’t every day be a “bad” day? That’s how I look at it. If I can go for a week or two of good days, than I have a very strong feeling that this will not be permanent.
After having about 7 consecutive good days, my symptoms are starting up again. I’m also getting the blocked ear feeling again and I haven’t had that in over a month. This is really a very complex thing we have and we get so many different opinions, it hard to really tell what the final outcome will be. I guess the best thing we can do for ourselves is try to not freak out about it (and trust me, I know how difficult this is, I certainty have my share of “freak out” days), we have been dealing with these symptoms for a year now, and during that time have seen great improvement, so lets just take it one day at a time and see what the next year brings, I have a VERY strong feeling we will all see much more improvement.
Hi Read your welcome and positive post. Re. ear problems. Do you also get kind of ear ache a bruised ache feeling that comes and goes that almost feels it is down the eustation tube sort of from the ear down side of neck? With me it comes and goes all the time'
Thanks for all your input I really appreciate it. After my cry fest I had to remember that my MD had a terrible accident 2 1/2 yrs ago and she had alot of nerve tingling and she said it took 2 full years to go away and she keeps reminding me that we don't have nerve damage so there is no reason why this shouldn't keep getting better over time. She also reminded me that the nerves are the slowest parts in our bodies to heal.
Also, when I was at UCLA I saw a big sign as I was walking out from a doctor there asking if you had the H1N1 virus or vaccine they were asking you to give blood for the antibodies but it said you had to be vaccinated within the last year. So I was thinking that we obviously still have the antibodies working in our system for up to a year so maybe that is why our nerves are still being affected? Maybe when this vaccine wears off we will see alot more improvement. What do you think? I don't know if I am grabbing for straws or if this makes sense. Take care, Julie
Chris - don't get the bruised feeling, but I do get sharp shooting pains from my ears up to my head, I get them almost everyday, then it stops for a while, then it starts again. They only last for a few seconds, but i can get anywhere from 5-20 (or more) time a day. ENT said it might be jaw related, but I'm sure it's the nerves, like everything else.
Julie - that makes sense to me. But I don't think anyone really has a def. answer to it. At this stage, I guess we all just have to wait and see what happends, but I REALLY hope your the theory is right!
Hi Do you get ear ache at all? You mentioned blocked ears. Mine can feel like a pressure as well and I am sure my hearing is not as it should be Also do you get Tinitus Mine is worse sometimes. But the Dr has looked in my ears and they are OK so I am lost!!! Its all a bit of a tangle with the symptoms.
have not been able to post for over a month -- had terrible trouble w/wisdom teeth extraction, wouldn't heal, had a dry socket and then an infection, took almost three weeks (not sure if it's related to all this, but it's been difficult healing)
then had bad sinus infection
am healing, but still tingling, in tremendous nerve pain all over, i def. get the blocked ear feeling, it switches from one ear to the other
i haven't been to any docs in a long time, just teeth people, and my brother the dr. finally diagnosed the infection
i am 90% better on most days from vaccine symptoms -- all symptoms are still there but less intense -- this is much better from two months ago -- i feel like i can live my life
on the days when i am hit again by it all, it is horrible, and the fear hits
i think it is pns, not central nerves, because i did not have paralysis, am i wrong about this? am confused about the difference?
one of my students, who is an infectious disease doc says that as long as i see improvements, it will keep going in that direction, but it will take a LONG time
i am giving the kids the flu vaccine on monday (my pediatrician feels strongly about this, because one has asthma as the other one is still "high risk" because he is only one) and i am anxious as all get out about it
but if they got the flu and had complications, i would feel horrible too
they are both in classes and around a lot of kids
the whole thing is terrifying to me all over again
i'm due for my year "helliversary" on november 12th -- what a terrible day that was!
im just trying to hang on to the moments i feel good and appreciate what i have -- i appreciate all of you who keep posting and staying connected -- no one else really understands
Easygoing: Thanks for your kind words - if anything I have written has helped anyone - then it is not in vain and makes me feel better to know I have helped. Nice to hear from you - I remember your first post very well :) Hope you are feeling better and better.
Michelle - I have thinking about you and wondering how you are - I figured you were dealing with some fallout from the wisdom tooth situation...nice to hear from you - and sorry you have had such a challenging year - you are a total trooper!
Jackie Julie Chris: Ladies read all your posts - what can I say - this whole thing ***** and remains an even bigger mystery than before with all the communal ups and downs, discovering of new and confusing information, doctors who can provide so much help - but confuse the matter more....good grief. I think we just need to remmber the graph anecdote: we are on an incline but it can be a very jagged line at times - and not necessarily due to symptoms. Emotions run high as well. Finances are strained (wouldn't I love a check from the gov for all the tests, meds, taxi's, lost wages etc) And on and on and on...
I have had the vibey's restart in my crotch area. Yup, you read that right. All up in my backside and frontside. I hope you are all laughing at me right now. If not - you should be...please let it out...laugh at this because in all of this monumental medical f*ck up, I was sitting at my desk for 2 days straight, trying not to panic at this 'new' symptom and yet there it was. Tingle crotch. Tingling in my nether regions. WTF? Obviously nerve irritation there too...honestly!
Still have all the usual waxing and waning symptoms...climbing...climbing...falling...regaining my footing..rising above it...sinking below it with fears and frustrations, able to laugh at certain things....unable to find the humour in anyone else's suffering - my heart breaks for the tears of my friends on this board...wierd signange asking for blood donation with antibodies...knowing it is still in my system...what is happening in there? Healing? Reacting still? (That is by far the worst worrythought) Will this heal? Panic ensues...
It's been a long road...I know how you feel. Keep going....keep going.
Love and hugs to you all. I have had my share of ups and downs this week - like eveyone here.
Travelling next week and putting on a trade show. Lord help me :) Will touch base when I am back from being a tingling road warrior...
Also seeing my GP on mOnday for my annual physical - will glean as much info from her as possible re: length of time a vacc lasts in our system and report back.
We WILL heal from this. We will prevail. We are not reacting anymore - we are healing. Be bold with this affirmation. I am being bold with this. I AM HEALING! GRRRRRRRRR!
I didn't have the flu shot but I had a rabies shot and I had aches all over for about 2 weeks. Now it is just in my hands/fingers/wrist/feet/toes. I have been to my GP about it and she said she thinks it is inflammation around the nerves. Is this similar to what you lot on here have experienced and is yours in your hands and feet? Why is it just in my hands and feet? I asked my GP if there was any nerve damage and she said she doesn't think so because if nerves are damaged you can't use them easily (eg bend ur fingers) and they go numb etc. I dont experience this really. Sometimes my foot feels a bit hot for a few secs or I get a jab of pain from a toe/finger and it gets worse when I use my fingers/feet cos when I relax the pain goes down. Right now I dont have much pain but they feel a little achy still. So, does it actually heal up over time?
Despite up to 3587 Miscarriages, CDC Still Lies about H1N1 Vaccine Safety
In a shocking report, the National Coalition of Organized Women (NCOW) presented data in September from two different sources demonstrating that the 2009/10 H1N1 vaccines contributed to as many as 3,587 cases of miscarriage and still deaths. Despite having the data, the CDC has continued to assure pregnant women, a prime target group for the vaccine, and vaccine providers that the vaccine presents no risk for pregnant women.
NCOW used data from their own survey of pregnant women aged 17-45 years and the Vaccine Adverse Event Reporting System (VAERS), including updates through July 11, to estimate the true number of miscarriages and stillbirths following an H1N1 flu vaccination in the U.S. NCOW estimated the number of miscarriages and stillbirths due to the H1N1 vaccine during the 2009/10-flu season to be 1,588, but they also noted that the figure was an average and that the number of miscarriages and stillbirths could have been as high as 3,587.
During the Advisory Commission on Childhood Vaccines (ACCV) meeting, Sept 3, 2010, Eileen Dannemann, Director of NCOW, presented the findings for the second time to Dr. Marie McCormick, chair of the Vaccine Risk and Assessment Working Group. Just prior to Dannemann's presentation Dr. McCormick, had pronounced that there were absolutely no H1N1 vaccine-related adverse events in pregnant women in 2009/10, directly contradicting the evidence publicly available.
"This baseless and fallacious assessment by the CDC assessment group has given the green light to the CDC's Advisory Committee on Immunization Practices (ACIP) to continue their recommendation to give the 2010/11 flu shot to all people, including pregnant women," said Dannemann. She also noted that the upcoming 2010/11 flu vaccine contains the same elements that are implicated in the killing of these fetuses, the H1N1 viral component and the neurotoxin mercury (Thimerosal) plus 2 other viral strains.
The following week at the Sept 14th National Vaccine Advisory Committee (NVAC) meeting Dr. McCormick, pronounced, once again, that there were no adverse events in pregnant women - despite having been informed on two previous occasions of the VAERS data. At the conclusion of the NVAC meeting, Dannemann submitted the data for the 3rd time during public comment and asked "Why hasn't Dr. McCormick looked in the VAERS data base?" Dannemann’s answer: "She looked where she knew she would not find".
The NCOW report states: "It must be argued that the CDC was grossly negligent to fail to inform their vaccine providers of the incoming VAERS data, while providers blindly followed the CDC "standard of care" guidelines to vaccinate every pregnant woman in 2009/10. Furthermore, in the face of these findings and the purposeful withholding of these findings by CDC's Dr. Marie McCormick and her vaccine risk assessment group, for the CDC's Advisory Committee on Immunization Practices (ACIP) to recommend another iteration of the same vaccine to pregnant women in 2010/11 may be argued as more than gross negligence -but rather- an act of willful misconduct."
In addition to roundly condemning Dr. McCormick and the CDC, NCOW strongly recommended that the CDC withdraw their continued recommendation to pregnant women, noting that "in light of the overwhelming adverse events reported, we emphasize that inoculating pregnant women with another untested vaccine containing a combination of components found in the offending 2009 H1N1 vaccine is insupportable."
Instead, NCOW recommends that the CDC adheres strictly to the FDA/manufacturers warning on the insert package which states that the flu shot not be given to pregnant women unless clearly needed. NCOW also called on the CDC to "advise all Ob/Gyns, vaccine providers and the public this year, of last season's VAERS reports on H1N1 vaccine-related fetal deaths".
Yet another reason why I will never get another vaccine in my lifetime - and I will encourage my daughter to do the same - this is atrocious and controversial and upsetting and awful and I cannot (for the life of me) figure out why there is so much 'covering up' of vital information and why this is such a taboo subject and why the doctors themselves seem so reluctant to recognize that there are serious issues her - it's like no one is listening - to these women, to us, and to the gereal population...this doc refers to issuing another 'untested vaccine' for 2010 flu season - WTF - how can they get away with this - it's like we are guinea pigs for them. Those poor women who lost their babies - I cannot even imagine.
Today have so many symptoms and tremors and feel gross again...numb in places, motor boat in my crotch -
Have a physical tomorrow and will see how it all goes...then travelling.
I was wondering about you if you were busy or not feeling well. Although, I find I get too busy and tired to post very often. Weird symptom - crotch buzz?! I am laughing with you, not at you!
My naturopath keeps reiterating that I need to keep up with the liquid Vit B complex morning and night - needs to be taken on an empty stomach, this is important for absorption. The B's help heal nerves. And she says that we can't get enough from our diets to help heal, only enough to keep us functioning well enough. So if anyone isn't do this already, please try it. I have very minimal symptoms and then it's only an occasional flare-up in stressful situations. Also, for me, I have to stay away from caffeine. It also will cause something to tingle. But my nerves love wine, I have to tell you!!!
Thanks for the info, gymdandee. I think all of us know how the CDC, and other medical organizations keep all of us "little people" in the dark. It's like someone here's neuro told them that they don't want to scare us with all those "trivial" side-effects so the masses don't get vaccinated. It all comes down to money, doesn't it? How many of those CDC docs have or will work for the drug/vaccine companies? There, Robbo, is that enough distrust for you?! Hope you are doing okay, BTW.
Michelle, I hope your kids come through their vaccines okay. Are you going to follow Dr. Blaylock's protocol to prevent their immune systems from over-reacting?
My kids were not in the vaccine line-ups at school last week and they were very happy about that. My daughter is extremely worried that she could be biologically susceptible to vaccine reactions because we're related. And of course, that could be possible. Who knows? I'm just making sure they take Vit D every day to prevent the flus & colds.
Feeling a little depressed lately. There seems to be a rash of parents that I know or know of that have been diagnosed with cancer. We wore "Pink to the Rink" today in honour of a hockey mom with four young boys that died on Thursday of breast cancer. I just weep for the parents who die young before their children are raised. If I had a choice what I went through this winter and cancer, I would definitely feel that I've been through the lesser battle. Yep, life is definitely more fragile than I used to think in my rash twenties. I sometimes (or most times) wish I could go back to the more "innocent" days!
On that sobering thought, I got to go and get dinner going for the fam, and I'm going to have a glass of wine too!!!
Take Care Everybody & Have a Great Week!
Corie-I so share your feeling about the lost innocence of life due this horrific episode. Hopefully, we get our groove back and not live in fear.
Gymdandee-thanks for the info. I had a friend who had the swine flu shot, had a miscarriage, went to the doc and the RN made a seemingly small comment about how many miscarriages they had had over the previous month. My friend started thinking about the coincidence and the prevalence of swine flu shots. Who knows! And, that's the problem-no one seems to know. Accurate records are not kept. I had to report my reaction to VAERS, none of the doctors I saw volunteered to do so even though they all agreed that I had a reaction to the vaccine! Reactions are grossly underreported.
Thursday, 9/30, NPR Talk of the Nation featured a doctor from CDC encouraging everyone to get the flu shot and how wonderful it is. I was grinding my teeth. A doctor from the UK called and discussed how studies published in Lancelot, performed on seniors in care facilities, indicated that the flu shot was not necessarily more effective than the placebo. The UK doctor refuted the benefits of the vaccine and mentioned that if anything, immunizing mass populace exposes many neurological reactions. I gasped and he was quickly dismissed. Grrr. This fall, as some of you may have already heard, a higher flu vaccine dose is being offered to the older population since their immune systems are less active than younger folks'. The CDC doctor said they really didn't know the efficacy of the stronger vaccine, but would find out by immunizing the population at large. Wonderful! Wish they'd let people know that they're participating in a drug trial.
On another note, I saw my neuro last Friday. She wanted to see me 1 year post shot (which was 10/06/2009). I told her my current, but much improved symptoms: tingling in my lower legs and dry eye. She told me that since I am tingling daily and intermittently-she said that great! She told me I should continue to experience this intermittent tingling for several more months. I told her that the nerve pain (I still have occasional burning in lower right calf, especially when I sit for long periods of time) seems to come and go, but when it returns, it seems to decrease slightly. She said that's how nerve pain is, it doesn't slowly decrease in a consistent manner. It comes and goes, at times more painful, but eventually, the pain decreases and should go away. She said that in the future if I over do it physically, like go for a really long hike, I may have tingling and nervey sensations at the end of the day. She said I may (may!) be left with that. Also, I mentioned that since my tingling began in May, I've also had muscular pain and tingling in other parts of my body (hands) that I didn't think were damaged. And, the neuro quickly jumped in and told me that probably many nerves all over my body were damaged (including eyes), but the pain in my legs probably outweighed other discomforts and the reason I felt pain my legs most is that the leg nerves are the longest in the body and their damage will be more felt and will be slower to heal than other areas. And, again, I mentioned MS and she said no, no; MS nervey symptoms are generally asymmetric, everything has been on both sides for me. I also told her that I developed high occular pressure this summer and I suspected Neurontin (of which high occular pressure/glaucoma are symptoms), which I quickly (with doc's guidance) stopped taking. I had my eyes checked a week after I stopped the med and the pressure was still elevated. The neuro said that from her experience, physical side effects from meds can take 2-3 months to resolve, even though the med may have cleared my system fairly quickly. She told me to let her know my eye pressure in December when I have my eyes re-checked. If the eye pressure is reduced, the high pressure may be attributed to the med and she'll report the side effect. The neuro said exercising is great, but don't over do it, i.e., don't train for a marathon. But, she highly advocated yoga and stretching. The neuro said that I am doing great and she is pleased and I am healing properly, i.e., what she's seen in the past. I guess that's comforting, but grrr, wish all of these nervey issues would just go away! (I know you all know!)
Someone brought up clogged ear issues. Yup, I had this on and off most of the summer and in scary ways at times, like a sudden head pressure change and an ear that was no longer receiving sounds. This has gone mostly away for me. I asked 2 docs about it and they attributed it to allergies. So, while perhaps it may be due to allergies, maybe it's due to weaked nerves-who knows, but the docs didn't seem concerned.
Julie-I'm not doctor, but colloquially: as stated on this blog previously, most of us have had peripheral nerve damage. This is different than degenerative neurological diseases (e.g., MS) which affect the central nervous system (brain, spinal column). Peripheral nerves can heal, which may take time. Hang in there and don't freak yourself out! There's a ton of info on the web regarding peripheral nerve damage, read for yourself from medical experts (and, watch what you read on blogs and really, the web in general. I'm just sharing with you what I have read.)
Take care everyone! Slowly but surely we will heal.
hi everyone - good posts and great reading. thanks for all the medical info PFH - your posts are amazingly detailed and I eat up every word - you have an amazing neuro doc and it was really helpful to read.
corie: f*ck cancer. I hate that friggin disease - too many sad stories and too many lives lost - I agree we have had less of a battle.
I have equated this illness and recovery to mountain climbing. We are all somewhere on K2 - facing all the same endurance challenges - just in everyday lives.
Am working lots and traveling this week - will be sure to check in when I am home on the weekend.
My docotor's appt was OK - basically just getting good medical care - we had our physicals. Ultimately for me - as long as all tests are normal - I will keep climbing...in hot sun, rain, blizzards...get to the summit....we can make it.
Hang in there everyone. Continued health and recovery and healing to all - it's such hard work and takes alot of dedication.
I have something to say and I am just gonna put it out there:
I love you all very much. Truly. Massively. Would be lost without you all. You are all so special.
Cori – I def. agree with the nerves liking wine. I have never really been a big drinker, but lately I find that white zinfandel is so helpful when it comes to relaxing. I love it.
Michelle thanks for sharing all the info. from your neuro, as I always say, I love to hear what other peoples doctors have to say, it’s very encouraging.
My therapy is working out well. It is nice to have someone to talk to she tries very hard to understand my problem. I was questioning why some people have a bad reaction to vaccines and others don’t. She pointed out (and I remember someone else bringing this up here once before), that I had a lot of stress and things going on in my life when I got the shot and who knows, maybe that contributed to my reaction, plus my history of untreated anxiety and depression could have attributed to it as well. May the shot just put me over the edge, who knows???
I would rather go through this 100 times rather than be fighting cancer. I def. count my blessings on that one.
Chris – I to have days when I am very tired, it’s funny because I get so tired yet I can’t sleep, weird. Sometime I’m so tired at work I go into the ladies room and I sit on the floor and put my head back against the wall and rest.
Cathy – right back at you with the love girl (and all my friends here). I would be really lost without you guys. Jackie
Jackie: I noticed back in January that wine made my nerves feel better too. I actually started to crave it which scared me into thinking I was on my way to alcoholism! But the urge levelled off and I'm not craving it like I was.
Maybe because I had two flu shots at the same caused my over-reaction? Who knows however, and I don't want to take any chances again.
I still haven't heard back from the officials "investigating" my case. Next month, it will be a year and I'm going to call and remind them of that.
Okay, now all this wine talk has me wanting a glass, but I haven't gone to the wine store. Boo hoo!
Hi Well saw the Dr today reguarding hubby having his vac Here in the UK the swine vac is in the seasonal vac. well in the surgery the notice said this vac does not contain Mercury this year So what have we got Mercury poisoning or what.!!
Anyway the thought is that if you were off colour when you had the vaccine this could have happened also it just might be just you and what your body did to itself with the vaccine.
The G. Barre syndrome Society is saying for them not to have it. So I said what about us with neurophathy He says there is nothing on that and you can develope that for anything. Well I only had it after that and hubby not so bad but he was laid up 5 weeks and had lesser symptoms but still left with some still
So what do you do You can wait and see what happens with this vac or not have it or have it Its as easy as that!!!!
Anyway I am fedup thinking about it for today.
But are you still protected after having flu vacs for years and also last years swine vac.Would these great beings on the drug companies be kind enough to let us know!!!
Hope all ok Cathy how is the extra curricular buzzing going?!
Michelle how are the kids?
ouch...nerve pain hurts. At least mines not paining constantly....but it is there in the background. So I guess people have this nervey pain. do you get a warm feeling in your feet sometimes too? I do, it feels like a wave of warm air going over (or under) your foot for a few seconds. I read that the blood supply to the nerves is inside the nerve itself. I also read somewhere about laser treatment to help the blood supplt repair the damage. I don't know if they are actually damaged though like in car crush injuries are they. It must be something to do with inflammation but I don't know how this affects the nerves.
Hello, (to all who remember me, and to some new posters as well)
I am back on here, after a very busy summer season. I was feeling 95% better for 3 months. (minor numbing on hands and face) Mid September the weather changed and I started feeling very numb. And then I started a bootcamp class(because I had felt so much better for so long), and after about 3 weeks of bootcamp twice a week, I have reverted back to square one. So I guess this is not over for me. Therapy is something I am seriously considering as my spirits have taken a nose dive. I really wanted to resume normal activities and fitness levels. Helliversary is Oct 29th.
I checked in at my GP's yesterday and he referring me back to my neurologist for a check up. I don't have my hopes up, but I do feel it is wise to keep in contact with these people.
I only lightly skimmed through the last posts, but one that I came across was that this may be permanent in some cases? I wonder if the same is true if the nerves have at some time felt 100% better, wouldn't that mean that it is not permanent? I hope so, if they have a the capability to feel 100%, I sure hope...
But what is with feeling better for 3 whole months and then almost back to square one???
Happy to be back on here with the support of all of you, but Sad to have to need the support...
Good to hear from you but sad you are feeling like this now.
Well someone has said healing is like this and hopefully you will get better again quickly and you have just overdone it. I think that neurologist said in that post if the nerves had healed they will do again
It isnt a straight line this healing infact the whole thing is a bl----y mystery.
Anyway good to hear from you I am not too good at the moment just feel so week all the time. I start to do anything and have to stop to rest. Makes life lived in a small circle!!
the best Chris
Hi again just thought as you said this started in September do you think it might be this lack of light(S.a.d.) that has something to do with it. Just a thought as my husband has bought one of these lights and he is feeling brighter with it so far!!
Has anyone been tested for Mycoplasmas to see if you are infected? Some people have know tp be infected with vaccines. Anyone get sweating? This can be a sign apparently but not necessarily. I checked out immed.org Of course it doesn't mean we are infected but worth checking maybe.
Read my post on this very page....
Vaccines are infectious, toxic, poisons..everyone will be different how their body deals with this insult..
Carmen, I so feel for you...
Getting away from the whole 'damaged nerves' deal, for some of us, our systems have been damaged at the DNA level. Therefore, when we exercise and breakdown cells to rebuild ourselves 'stronger', the sad fact is that the new cell is already damaged....any kind of exertion for me will result in tendonitis immediately in that area.
Which is why the Specialist suggested only only a stem cell transplant is a patient's only hope, once our DNA becomes damaged.
Due to a vaccine, I now face a battle for the rest of my life with this.
Some of you may be far luckier than me.
Please think twice before injecting anyone you love with these toxins.
Hey folks just catching up on the latest posts - have been working in NYC and then had a little mini break from sat to sun in the big apple - worked alot, walked alot, saw alot and did alot - had a few bad patches but the general physical excertion was not too bad - however more tired and 'feeling it' today - but all things considered - pretty good.
This is such a baffling thing with these ongoing symptoms..but I have to say - with all the stuff I have done in the past 5 days, I only feel like I have been hit by a small truck, not a big one...still buzzy vibey etc...oh it's all such a giant bore to me now, except when it scares the hell out of me, of course :)
Encroaching the one year mark like so many...I have learned the lesson of too much excercise and don't recommend overdoing it to anyone - I set myself back and made it worse...am taking it real slow now...
It is Canadian Thanksgiving and I am so truly, wholly thankful for all of you.
He says that the neurologist says that hypothyroidism is the second most common cause of neuropathy/small fibre neuropathy!!!!!!!!!!!!!!!!!!!!!
I also googled vaccines and hypothyroidism and it comes up with a paper on dogs which suggested that the vaccinated ones have higher TSH levels and lower T3/T4 levels than unvaccinated ones....this suggests they become hypothyroid....and now we know hypothyroid can cause neuropathy so go figure. What are people's thyroid test results? My TSH was normal range 1.79 today and B12 about 460.
Sorry and sad you have had a relapse. The fact that you felt 95% better for 3 months is so encouraging though!! Stay postive the mental state has alot to do with your healing. We are all human and we all break down but just try to stay positive and remember all your good days. We are all hitting the 1 year mark and I think that is depressing for all of us but I am not giving up. I have gone back to just tingling in my feet and leg thank goodness. Take care, Julie
Carmen – I too am sorry you are having a set-back after having so many months of feeling good. I do believe that this will pass and I agree that since we have times of feeling almost 100% than I think eventually it will all just go away, CAN’T COME SOON ENOUGH!!. I can’t believe we are all going on a year with this horrible thing. I know how discouraging and scary it can be having felt good for so long and then just get blindsided with the symptoms again. Although I have never had months of feeling good, for me usually it’s a couple of weeks or so, but I would imagine the feelings would be about the same. My eyes are driving me crazy lately, I feel like I can’t keep them open and they are so dry all the time, they are my biggest symptom right now, I’m sure next week will be something else. Hang in there. Hope you are starting to feel better since your post. Jackie
Jackie-yes! My eyes have been hurting a lot too. The entire eyeball hurts, socket-like pain. I've seen an eye doc and was diagnosed with dry eye, which began with all of these other neuropathy symptoms, indicating my autonomic nervous system was also affected. The eye doc said it could go away, eventually, but can take a looooong time. He mentioned 3-5 years, but really, truly-who knows! Hang in there and use loads of artificial tears (NOT Visene, or any other red eye reducers, just artificial, lubricating tears). But, yes, my eyes are the biggest symptom right now too and it's so darn painful! I work on a computer constantly, which is horrible for dry eye. This entire experience has made me really question my life, lifestyle and strive toward happiness instead of complacency. So, while it hasn't been fun, perhaps there's a reason to it.
Yes, it is frustrating to feel great and then slide backwards. But, as has been said on this blog and as my neuro has told me as well, nerve pain comes and goes-that's how nerves recover. Nerves don't get better and better in a linear fashion. They seem to get better, then slide backwards, get even more better, but may be retrograde again. But, overall, the upward trend continues, with some troughs. Hang in there, don't dwell on it too much (I know it's hard), but before you know it, you will improve!
Thanks PFH - I have been using Visene, which does not help very much. I'm going to pick up some lubricating tears today. Maybe that will help witht this eyeball pain and dryness. Thanks for the suggestion. Jackie
Hi I too have dry eyes and cannot open them in the morning. I put individual ViscoTears in them, as if they are just from a bottle they have a disinfectant in them which if you use a lot, are bad for your eye. Meaning they could irritate it (So my doc says) The individual ones are steralised and therefore you can use all day. I sometimes put them in every hour.
It is very strange all of this I have a dry mouth too anybody else?
I just don't understand if they have medication to fix everthing else why do they not have a pill to fix our nerves and immune system for us? I am just venting and I keep seeing flu shot signs and it really bugs me. Julie
jc(Julie).... look at what happened to Robbo, he had to be given IV's of antibiotics to finally get better... Neurologists tend to look past the obvious... I'm still thinking that antibiotics are going to make me better if anything ever will, and I'm still taking them... Steroids will help to fix your immune system, but you have to go to the right types of doctors (which I have yet to do)... I'd be curious do know if anyone here has been to a doctor of Internal Medicine? or an Infectious Disease doctor? I'm through with the neurologist and I won't be going back, I was supposed to go back over a month ago (and was supposed to have a 2nd emg), but I'm done with doctors who won't and don't know how to fix anything... I'm not getting anymore tests from my neurolgist and won't ever see another neurologist again in my life.... I will continue with other types of doctors who actually try something to help me...
I have been having a ton of muscle twitches the last few days, my wife has been able to feel them several times too... So I think this is probably my lowest point.... I am getting worse but sloooowly getting worse so it may even feel some days like I slightly improve, but the overall trend is all downhill.
How would steroids help us with our immune system? I was told steroids lower your immune system and make you more suseptible to infection. I just think that was some potent chemical a year ago to make us still have issues!!
Turtle: I am sorry you are having the twitches. I still have the twitches myself and they are annoying. Hope you feel better soon. Take care everyone, Julie
Sorry, I forgot to mention that I am also just amazed that I have personally made complaints to all the right people and no one has ever followed up and so all of our reactions just get swept under the rug. Besides no one caring about what happened to us they don't care what happens to everyone else that gets the vaccine this year. It just makes you wonder how many things are covered up. Julie
Thank you Julie,
Unfortunately, there's far too much money riding on this, for anyone to be 'caring'..
Let us all think just for one moment, how many ' unreported' cases there are?
My hospital did not meet this basic right point-blank, because not one single doctor, was prepared to put his signature to the document, for total scientific lack of proof... why would they?
To be fair, even my own family, and close friends (many of whom have had the vaccine) genuinely cannot believe my total and massive decline in health is solely due to one vacc... kind of leaves us out there on our own doesn't it??
Not wishing to scare any newcomers here, but the challenges many of us now face, for the lucky ones, will be several years, for the rest of us??....Strength can only come from within. I now accept what has become of me and am about to start a new challenging job, using that which I have left. Anger is normally not productive, but it got me off my a*s...take care all..
jc(Julie) all I'm really saying is that steriods would help to suppress our immune system in the case of an auto-immune reaction, but if it's actually just a bacteria at work maybe it could make things worse?? Not sure if it will help or hurt though, but I'll try it out at some point if I have to....
Since I did get my flu shot at Walmart, and the foreign idiot who gave it to me injected it into my bone (it is supposed to be an intramuscular shot), maybe they will be willing to give me some $$ if I ever become really bad off if I threaten to sue... It probably wouldn't take much to make me shut up and go along my own way.
How often are you getting the twitches Julie?, Your muscles sometimes feel like they have a mind of their own, right??
Yes, my muscles have a mind of their own. I mostly have twitching in my legs but I also get them above my eye and on the side of my head just kinda all over it just depends on the day. In the beginning I had them all over and alot more pronounced. Now they are lighter feeling but still there along with the tingling.
Robbo: You are not kidding when you say we are all on our own!! I have felt that way since the start when the doctors have looked at me like I am crazy when I tell them what I am experiencing. I am just so glad I found this website so I don't feel so alone and scared.
Take care everyone, Julie
Michelle: did you look up Dr. Blaylock? He recommends a cold pack on the injection site as well as other recommendations to tone down the vaccine reaction. One of the more believable theories for what happened to us is "over-reaction" of our immune system.
Carmen: I tried bootcamp when I was healthier, and it did me in then! We endured a major assault on our bodies so it makes sense that it would take a long time to heal. I just read an article about a fitness trainer who had prostate surgery and he said it's been a year and a half later and he still can't train and exercise like he used to. So don't get down on yourself if you feel that normal should happen for you within a year or two.
A bit off topic: but I just read that we would have to drink 10 glasses milk daily to meet preventative (to help ward off cancer, MS, flu, colds, etc.) daily Vit D levels. I'll continue with the Vit D drops instead thank you. Just thought I would mention this since a friend told me she drank milk to get her Vit D. but I doubt she's drinking 10 glasses!
I am also taking a ton of vitamins, magnesium, calcium, vitamin D, vitamin B complex, vitamin E... maybe it's working maybe not, but certainly can't hurt... Strangley enough I remember towards the beginning (about a month or two into this whole ordeal) I was eating several bowls of Total cereal with milk each day... and for a few days I though this monster has gone away.... then it came back with a vengence. (it's like every time I make progess this monster comes back and says "I'll show you to try to get rid of me!")
Anyways I came to post on a very strange symptom I had last night... my heart muscle was spasming, pretty rapidly in the middle of the night (for about 5-10 minutes) it actually woke me up, my whole pulse was going haywire... has anyone else had this happen yet?
Robbo: Magnesium is a good idea too. My naturopath has me taking this too along with calcium in a liquid. I am very happy with my naturopath since she has given me hope and encouragement. My family doctor has been okay too. The neuro hit on a little bit of my problem, but missed the over-all picture and actually my doctor did a better job of diagnosis. It's too bad that you haven't been able to get better supports. Do you think you need to see a counsellor/therapist/professional to talk about what has happened to you?. Congratulations and good luck with your new job!
Turtle: I had a very fast pulse (tachycardia) and chest spasms in the beginning. That's why the neuro diagnosed chronic hyper-ventilation (but nothing else), but I haven't had that symptom in months. As a precaution, I had an ultrasound of my heart, but everything was good. The only explanation was that my nerves possibly were going haywire there too.
Cathy: are you still working and having fun in NY?
It's a hard time of year isn't it? Flu shot campaign at work...have to grit my teeth! Of course, I'm the one known at the hospital "as the one who got sick" so I am getting all the questions. The bosses seem to avoid me too, probably worried that I will make a fuss. I don't bother getting into it too much, but tell people to research the pro and con sides of vaccines and that there are more risks than just "arm pain and a slight fever". How conned the public is huh?
Hey there guys,
sorry my last post was not very cheerful in my usual style....
But guess what, the people that are coming to this site, really don't have a lot to be positive about? I challenge anyone of you, to prove me wrong...
It is great to think, "all this will be gone, in a couple of weeks or so..." but we really should get real. We know damn well this is not true. We have been poisoned! Do you know what that means?? I was about to launch into my usual tirade against the 'system'.., my life as I knew it is TOTALLY destroyed, these drugs are just plain evil if you ask me..Read that last sentence carefully....this is FACT, my over-active imagination did not make this up. I just hung up the phone, from a friend who had trouble believing I was not capable of going for a dive this weekend..saying to me. "Oh, thought you would be better by now"... Anger management would not have a place for me....my extreme anger at the medical profession, for unleashing such vile poisons on the general public, will accompany me to my grave....Oh Robbo, yet another cheerful post.... but I really think people out there really need to know what they are in for?? I really couldn't care less if any of you want to attack me for being honest?? The 'life' you had will be changed forever...
I would like to say something and I think I can comfortably say that I represent the vast majority on this site... I personally would like to applaud Robbo for being one of the most sincere, honest, and realistic people on this site... Not to mention probably one of the most informative with TONS of useful information....If I didn't receive all the useful information from people like this I would probably not even bother with this site anymore... Keep up the good work my friend!!!
Do people get aching in their hands and feet or only tingling? My Dr thinks my nerves are not damaged (eg not cut/crushed/compressed/pinched) but that there is inflammation around them. What's your docs say?
For those of you who may not know - some off the posts of the last few days have been removed. These comments were in response to a few posts that seemed (to me, in my opinion) negative, abusive, and destructive. SImply: I responded in kind (as did a few other folks and everything was removed)
I am working on starting a 'user group' for this forum - a place where we can set different parameters and focus on healng and supporting. I have not had time this weekend - but will look into this ASAP - the moderator Lira has been very helpful with this.
I needed to take a break for a few days, but am back and trying to give an explanation for the moderator's intervention - am still dealing with symptoms and passed the 10 months mark. All in all, slowly but surely, still moving forward. Still the biggest challenge and learning of my life - and working hard to move forward and be happy. As I am sure you all know: it takes a certain amount of commitement to stay focused and work at seeing the positive and (although slow) the progress we are all making.
I am fairly inconsisten on here, as the two little kids are demanding. So it is only when I have insomnia that I think of checking in.
Wow, a new site? Cathy...let me know how that goes. I still owe you a call, and have been trying ever since...thinking of you! talk soon
The eye stuff...yes, yes, yes...I have dry eyes often too, when I wake up...but not everyday. And I don't even have any good advise from my optometrist husband...(other than no visine, just lubricating tears).
My symptoms are still coming and going. One day I will be pretty good, and then one day, or a half a day I will have pain/numb/muscle tightening/muscle exhaustion and it strikes in my hands/arms, legs/feet. I have been off of the excersize right now, I will go back to very light stuff. I am feeling better since my relapse though.
We had a very huge vacation planned for our 5th year anniversary, planning over a year, and I cancelled it b/c I can't be sure I will feel as good as I need to, to spend that kind of money...you need to feel your best. I feel good about the decision, but wow...this set back has become a very big part of my life.
In two days it will be one year. Oct 29, 2009.
My new motto: focus on what I can do, not on what I can no longer do
Cathy: thanks for your efforts in trying to create or re-create our group that was much more positive and supportive in the past. I hope you are able to set parameters that will make this possible, since I am hesitant in posting again without them. I did just want to post one more time here, however, to thank you.
Carmen: our thoughts are with you on the 29th, your "hellniversary". I hope you drink some champagne to celebrate how far you have come from that day!
All this talk of wine and champagne, I haven't had a drop of alcohol since before this drama. I am worried about the way it will effect my nerves/heartrate/already foggy brain. Is this unreasonable? Does alcohol effect you any differently to before?
I hope that you come back and post again otherwise these others have won and wrecked it for us!! I hope all is well with you
Kaylee yep I get that racey irregular heatbeat if I have any alcohol and its the same with any caffine And that includes Chocolate!! And Foggy brain well mine is really bad and I suppose it has improved in the year(nov 27th) But its not up to scratch at all and its scarey
Cathy I bet all this sorting out and upset has taken its toll on you. Hope you are ok and work not too wearing
Hey Everyone - Glad to see that we have reconvened here somewhat. I will look at creating the user group next week - I am swamped and am traveling again.
Feeling decent. Some days better than others, and the good days are so good I could do a happy dance! The rest of the time, I just try to deal as best I can, like all of us here.
I think it's really important to stay connected. This is my priority - I want to keep communicating. Please don't stop posting here.
We need to see if the 'user group' is viable for us. Some folks may prefer to keep this forum open - not sure. Let me check it out and I can report back here.
Thinking of you all - hope eveyone had a good day,
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...
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
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,
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'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!
I have been reading these posts and it sounds like all my symptoms. The only difference is that I didn't get the flu shot. MY symptoms started after treatment for H-Pylori. It was called Prev-Pak and consisted of 60mg Prevacid, 1000mg Biaxin, 2000mg Amoxicillin. It was for 14 days and you had to take them all or it wouldn't kill the bacteria. The day I finished all the meds the nerve issues started. From my feet to my scalp. Tingling and electric shocks everywhere. Could barely sit down the nerves down my legs were so inflamed. The buzzing and vibrations were in my gut and down my left leg and later in my neck. Thought I would go out of my mind. Started the doctor merry-go-round. GP, 2 Neuros, 1 Rheumy, 2 Alternative MD's, 2 chiropractors, 1 acupuncturist, 2 physical therapists. Had all the tests, Brain MRI, cat scans, EMG and more blood tests than I can remember. What they came up with was some slight nerve damage on my left leg/foot. This was from a bout of shingles I had on the left sciatic nerve(L5 distribution) a couple of months before.
So they tell me its my immune system and it will take a very long time. It has been 26 months now. I am 50 to 60% better. I can sit here and type this although my RIGHT leg is tingling like crazy. There are some days my feet hurt so much I can hardly walk and other days they are not too bad. My eyesight has been affected (blurred vision sometimes and double vision) but I think that has improved some. I can now take care of my house and hubby(who has been great through all of this).
I am not the way I used to be. I don't know if I will ever be. The fear still lingers. I have to pace myself and be sure that I don't get too tired or I will flare.
But I try to stay positive and count my blessings.
I wish you all speedy recovery.
WOW!!! I can definitely relate to the 2 new posters... I had my flu vaccine on Oct 2nd, 2009.... tinglng like crazy was one of my first symptoms... along with having my hand and feel like it didn't want to move when I tried to move my fingers.... Seeing tons of doctors... neurologist, muscle twitches/spams constantly!!! Taking antibiotics... acupuncturist (waste of time and money... but then again so was the neurologist).... by the way... DON'T GET YOUR FLU SHOT AT WALMART!!!
I just checked out the facebook page.... good job!
HAPPY HELLIVERSARY! to me...
One year ago today. I feel quite emotional today. And quite numb and tingly as well. My symptoms keep everchanging as well. My hands and feet now have pain associated with them sometimes.
Welcome new posters! So sorry to hear that you are dealing with this stuff too. Happy to know that after a year we are still keeping positive for each other, this site is good for that.
Well can't write much right now, but will another time!
I have started a user group. Please feel free to join. With the help of the MedHelp team - we put some measures in place so that negative, disturbing, abusive posters will not get access. Apparently, I am the founder. Well that is a first. I would ahve much preferred to found my own clothing line, but such is life :)
It is not a secret that one poster was writing content that was unacceptable an offensive to the group. There is now a group that you can migrate over to if you want - it is an option if you would like.
The group's name is H1N1 Flu Vaccine Adverse Reaction (I think) and you need to send an email and request to be a member.
I guess in time we will see if we choose the user group or this forum - either way we have solved the problem of being a private group should we want to excercise that option.
To all the new posters - Welcome and...holy crap. Hard to believe that there are those that have suffered more - but Keeping Strong, I think you get the prize for worst affected. Honey, I am so sorry for all your trouble and I cannot even imagine being alone with this for a year before finding us. SO glad you did, but so sorry you are so stricken. I was like you in the beginning, but sloooooowly and graaaaaadually became better over a 10 month period. Stay in touch and I promise your life just got better with finding this group. We are here for you adn you are not alone. Hang in there.
Geofran - It is possible to have the exact same reaction as us from the vacc as from antibiotics. It is a common trigger to neuropathy. Sorry for your troubles, hope you are feeling better soon.
Please post any medical info you get from doctors - we are always starved for any medical info that can provide some answers for what we are going through...
Thank you for the welcome. I'll be joining the group.
I don't consider myself too unfortunate - if you consider it could have been worse with some people getting GBS, then I'm lucky. But thanks for your concern. It has been a very difficult year and I'm glad I've found some people who KNOW it's not in my head! So cheers for being here, I'll be a regular.
Cathy is away travelling and working alot; she is the one that needs to give you access to the new user site. So just give her time and I'm sure you will be joining us there. If you need to communicate in the meantime, you can send a message (not a note as it isn't private) to anyone of us.
Please remember that you can disagree without being disagreeable, and while you don't have to like everyone, you do have to be respectful. That's true for both sides of this argument.
We really want to be able to keep this thread going, but won't be able to if the arguments continue. Just respect that everyone has a right to their opinions, and keep the conversations to how you all can help each other. It seems as if you have a lot more in common than not.
Julie! How could you think that??? We need you there now! Sorry - it just takes time for me to log on and get updatedwhen I am working so much - at one point we can figure out additional moderators and make sure everyone gets on quick...Bella, you are so imprtant to this forum.
Everyone should migrate over - even just folks who prefer to read and not post - ALL are welcome. The fact that we have to do this is somewhat inconvienient (like very) but we must...this foum just wasn't working anymore and was getting to dysfunctional and depressing...
My next appointment with the neuro is on March 15th so i guess that's when I get my MRI results. The weird pulse sensations never have gone away. It always happens when I tread mill. I haven't exercised at all since I received the flu shot. I hope everybody is having a good week. I'll update everyone as soon as I know my results.
Hi all, hoping someone can relate to me here. I got the flu shot 10 days ago. The day after I got the shot I developed a bad headache that lasted a week. Then after the headache ended I started with tingling in my left foot and now it is still there and it moves to different parts all over me. I'm extremely worried and can't eat. I am tired and feel I am deaths door. Can anyone else relate please?
Hi Steph. It's been a few months, so not sure if you're still on here. I hope you're feeling better!!! I got my flu shot on October 11th this year. I've had the tingling, but not the other symptoms. It started in my left arm/hand (where I received the shot) and moves around to my face/neck, right hand/arm, both feet (though mostly right for some reason), occasionally my calves, and rarely my thighs. It's been really frustrating. It actually went away about two weeks after the shot for about two weeks, then it came back and has been around for the past 3 weeks. It's definitely scary and frustrating! I saw my GP and passed neuro exam about a week after the shot, so he suggested it might be inflammation of the nerves from the shot and possibly anxiety. Did you get any answers?/Have you found anything that helps?
Not sure if anyone still checks this forum who had bad reactions to the H1 N1 vaccine, but I'd love to hear outcomes--for better or worse!
Hello elizabethm17, Any improvement in your symptoms. I got the shot on 10th october and It all started with a headache and chills a week after following which tingling started in my arms mostly. Ocassionally in the legs. The hands feel very weak and now the tingling is right behind the shoulder blades and I am very exahausted and feel tired after doing basic tasks. I am also a very anxious person. Brain MRI is normal and also the EMG/NCS and all blood work is normal. I am going to another neurologist today. I have been taking Klonopin for anxiety and Ambien sometimes to sleep. I get only 3-4 hours of sleep average per night for the last 6 weeks. Life has been terrible and I am scared I might be going into depression too.
Can anyone else relate to all this.
Took a booster shot of anti-rabies (Rabipur 2 shots) after playing with a pet dog (the dog did not attack or bite me but there was a cut with some bleeding). Last shot was on 26th April.
Nine days later, on 5th May, just after midnight, I had a tonic-clonic convulsion just after falling asleep. I have no personal or family history of seizures (febrile or epileptic)
I had venous brain MRI done the next morning which was normal. In the evening I had a lot of bloodwork and an EEG done and both were normal. Neuro said that Rabipur could lead to ADEM but since MRI was clear that didn’t seem to be the case. He asked me to start with KEPPRA 750 mg and continue on it for 3 yrs.
I went for a second opinion to the neuro who conducted my EEG. He said that since I had no family history and no prior seizures, I should wait for a second episode before actually starting the medicine. He asked me to rest and avoid driving for 3 months. So I decided to wait.
The very next day following the seizure, I started experiencing humming/buzzing sound and slight giddiness whenever I would get up. I also noticed that this would happen whenever I would get up after lying down any time of the day. After a week, the throbbing went away on its own but the humming has since become permanent.
I went to my ENT when the humming and giddiness started and he diagnosed it as Tinnitus. He also did an Audiometry test which showed mild hearing loss, especially in the right ear. The ENT said that Tinnitus + giddiness could be either because of an infection, or because of DAMAGE TO THE CRANIAL NERVE or idiopathic.
Around 8-10 days after the seizure (about 17-19 days after the vaccine), I started to have extreme back pain out of nowhere. The neuro asked me to get an X-ray of the dorsal spine which was normal. I did a 5 day course of tramadol when the back pain went away but it came back in full force after I finished the course. It too has become permanent (it varies in intensity from day to day).
A week after the seizure, I also started having pins and needles sensations in my legs. Initially, I would experience only this when I was sitting. I also started having muscle twitches randomly a few times a day. One fine day (not very sure when), I woke up to find my left hand fully asleep. Since then the tingling/pins and needles/numbness increased a lot. I also started getting A LOT muscle twitching all over my body.
In the last 1-2 weeks, the numbness/tingling in my hands and legs has increased a lot. I also get shooting pains in my hand/leg that come and go away. Whenever, I pick something up, my hands start to pain immediately. Climbing stairs (only 2-3 stories) leads to a lot of leg cramping, tingling, discomfort and shooting pain. The rigidity in my hands causes difficulty in typing (for example) and makes it very difficult for me to lift anything for an extended period of time. I have also rarely experienced tingling on the right side of my forehead. I also wake up with a lot of numbness in my hands everyday. In the last 2 days, I have noticed a lot of numbness in my right leg and it moves in an “irregular” fashion when I walk.
Since then, I have tried to find whether the vaccine had anything to do with the seizure and the symptoms that I have suddenly started experiencing. I scoured the VAERS database which records adverse events after vaccine use in the United States. These are reported by public health authorities and physicians. I found 63 cases of tonic clonic seizures in adults (25-44) who had no history of epilepsy or seizures and had their first seizure 0-20 days following RABIPUR. The number of first time convulsions after ALL Rabies vaccines was over 300. Some of those 63 cases also listed tingling in the arms and legs and muscle twitching as symptoms.
My Neuro agrees that I had some sort of autoimmune/hyper immune reaction to the vaccine. He also told me that muscle twitching is a common feature of motor neuron disease but he also clarified that it doesn’t mean that I have it and he wants me to wait and see what happens. However this has scared me a lot. I have also read that tingling, muscle weakness and muscle twitching can be due to CIDP. My family doctor feels I have developed peripheral neuropathy as part of the vaccine reaction and it will take a few months to a year to go away.
Hi I'm in the UK had flu jab in Oct 2016 had all the symptoms of previous posts here. Its nearly four months of tingling nausea hives palpitations cant walk far without it all kicking in virtually housebound. Had body scan normal blood tests ok just inflammation waiting for nerve tests.trips to emergency dept with high heart rate and numerous trips to doctor. No help. Had one good week in 4 months then its all started again.seems any exercise makes it flare up. Anyone else had problems with this years flu shot? Reading previous posts seems like it takes months to recover.
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