HI THERE, JUST WONDERING IF ANYONE HAS HAD THE FLU OR ANYTHING SINCE HAVING GBS? I'M IN YEAR 2 AND AHALF OF RECOVERY AND AM JUST GETTING OVER WALKING PNEUMONIA, IT IS A LITTLE SCARY BECAUSE I FEEL THAT TINGLING SENSATION RUN THROUGH MY BODY AT TIMES. JUST WONDERING IF ANYONE ELSE WHILE SICK WITH A COLD OR FLU FEELS LIKE A RELASPE OF GBS?
Have you had a flu shot since having GBS? I was told not to take the flu shot again. That was the first question asked me when I was diagnosed. "Have you recently had a flu shot?" I have tried so hard to avoid crowds or places where there might be a chance of catching the flu. I do have a mild head cold right now and have been staying at home and doctoring myself. Think this might be better than going to the doctor where so many patients are in the waiting areas with the flu, etc. I got the GBS right after I had had an upper respiratory infection. It scares me to get anything for fear of having a relapse of GBS.
No I havent taken or will I take a flu shot.My doctors also told me to not take the shot.I have also tried my best not to catch anything,unfortunately I do work at a hospital though not around patients but most of my co-workers do and then are around me. I know the doctors told me that I may experience a false feeling of relapse. You are right it is scary. Dont ever want to go through it again. Hope you get feeling better, get plenty of rest, Ive been off work for 5 days going back tomorrow.
deltarat said:
Have you had a flu shot since having GBS? I was told not to take the flu shot again. That was the first question asked me when I was diagnosed. "Have you recently had a flu shot?" I have tried so hard to avoid crowds or places where there might be a chance of catching the flu. I do have a mild head cold right now and have been staying at home and doctoring myself. Think this might be better than going to the doctor where so many patients are in the waiting areas with the flu, etc. I got the GBS right after I had had an upper respiratory infection. It scares me to get anything for fear of having a relapse of GBS.
My husband got GBS from the flu shot. He was diagnosed in early November 2013. Spent 1 week in hospital and 5 weeks in rehab hospital. Now home in a wheelchair and is feeling like he isn’t making any progress at all. Goes to PT 3 times a week. I hate this.
Barb, I hate this for both of you., I was diagnosed with GBS on June 04, 2012 and in hospital or rehab until October 12, 2012. Then in out-patient therapy until Feb. 2013. I then started fitness therapy and can go as often as I like and anytime of my choosing. Think I will need this rest of my life. Have been lax during the holidays and can really tell it. Not whining just explaining. I also had to have colostomy in middle of the GBS recovery. The two of them together have really given me a workout and still are. Can’t complain. I am so much better than so many I have heard from and so much better than I was. God is so good! If I can answer any questions or be of any help, just ask.
By the way, I am 72. My hubby just turned 75. It has been hard for him, but he has been amazing thru it all and he has had 3 light strokes previously. I play piano for our church and am the only one in our church that can. Thought I might never be able to again, but hey, I am. Don’t give up!
Hugs & Blessings!
I haven't had a serious flu yet...but whenever I get sick with a cold the symptoms from the GBS do return slightly. The numbness in my hands and feet get worse, my hands don’t work as well, and I have a hard time gripping and grasping things, I drop things more often, and the feeling of pressure in my chest is worse. So is the weakness and fatigue, and that thing where my ankle will suddenly turn into a noodle with no warning, all of it. On another, related note, I was told I cant take a flu shot any more but I am not sure why. Did anyone with GBS ever relapse because of taking a flu shot? If not, then why do they warn against it? I am aware that a long time ago people suspected that the flu shot could have been the cause of some cases of GBS, but I am not sure that was ever proven, and if mine wasn't caused by a flu shot, why would it be dangerous to have one now? Wouldn't it be more dangerous to get the flu?
GBS 1974, 40th year since onset
I get a flu shot every year as recommended by ALL my doctors. Simply ask the person administering the flu shot for the “dead flu” meaning no active/live virus…these shots are normally given to older people(seniors) and people who have had onsets like GBS…you are safer with having a flu shot than not. The I don’t trust people or the I got the flu after the shot probably just don’t trust anyone in the know. I’m not saying Drs are know-it-alls,but, they come pretty close. You place your health in a more dangerous place not getting a shot than getting one. Besides do you really want to catch the flu ?
On a cautionary note do not take any kind of cholesterol meds…they will cause other onsets like Inclusion Body Myositis. My doctor was not aware of this when he started me on these meds and I am now dealing with IBM…if you have had an onset that impaired your immune system you must be careful and alert all medical pros that you are slightly different from the norm…Flu Shots Good … Cholesterol Meds Bad ! Ogie-bogie !!!
I had GBS 2 1/2 yrs ago also. Caught the flu this year but took Tamiflu as soon as I was exposed. So it wasn’t bad. Did have fever, and body aches, but resolved quickly. Still have some numbness in feet but Gabapentin really helps that.
Thanks for the heads up about the cholesterol meds. I had no idea! Nobody ever said anything about that to me. Are there any other meds I shouldn't take because of the GBS? Anything else I should be aware of that my doctor might not know about?
I’m not sure …check to see if the GBS Support Group has info on meds. Although when I told the medical advisor Joel Stienberg that I was diagnosed with CIDP he was pretty closed minded about not being able to get it since I had GBS… Now it is known that one in every 100,000 GBSers can be affected by CIDP… so lucky me for living in Philly where Drs are not well informed about neuro-viruses even if they had it themselves. Sometimes they become too proud about the positions given them … And the pride blinds them…I went over thirty years not getting treatment for the CIDP because I live in Philly where the Drs have inflated egos and don’t pay attention to the wake-up call when something significant is brought to their attention … Like they missed it ! And then they never say " “sorry”… Oops I guess I have a couple of issues. Check to see if Johns Hopkins has any research on medications and GBS survivors… They have been treating me for the IBM situation.
remember it takes a long time to completely heal from a total GBS onset a quarter of an inch a month during the healing recovery, so it can be a long time to a strong complete recovery…get a (dead virus)flu shot YOU ARE NOT AN ABLE-BODY ANYMORE !!! DO NOT, I repeat, DO NOT PLAY AROUND WITH YOUR HEALTH ANYMORE !!! GET A FLU SHOT !!! No more OGIE-BOGIE !!! GBS 40 yr survivor, CIDP ONSET possibly 38 yrs ago, IBM 15 yrs ago … You are a member of the disable community now whether you want to accept it or not…
Nannyjo said:
I had GBS 2 1/2 yrs ago also. Caught the flu this year but took Tamiflu as soon as I was exposed. So it wasn’t bad. Did have fever, and body aches, but resolved quickly. Still have some numbness in feet but Gabapentin really helps that.
The flu shot the Drs talk about is the Swine Flu Shot of 1976 (Gerald Ford was president and insisted it would be OK, wrong again Gerry) it was a disaster because the developers did not have enough time to properly test the shot. The gov’t insisted NOW !!! And people, mostly older adults, started coming down with GBS after getting the flu shot and some died. Now they give a dead virus shot highly unlikely that you will have any side effects from getting a shot…so what’s a dead virus shot? It is not active just a small piece so the immune system can build a resistance to the viruses in the shot( each year they , CIDC, determine what viruses are coming this way…and the dead virus helps the body build anti bodies in a manner that’s easier to do without any effects…most, if not all, the drug stores admin the "DEAD"virus flu shots because they have a long record of being safe to most people… A couple of years back I went to a community flu shot and because they were not giving a DEAD flu shot they advised and refused against me getting a shot … Happily I complied and that is why you have to tell people who are giving the flu shot about the fact you had GBS …
Nannyjo said:
I had GBS 2 1/2 yrs ago also. Caught the flu this year but took Tamiflu as soon as I was exposed. So it wasn’t bad. Did have fever, and body aches, but resolved quickly. Still have some numbness in feet but Gabapentin really helps that.
GBS is caused by an immune reaction to a virus. It doesn't matter if the virus is live or dead, either one can trigger the reaction, and it doesn't have to be the flu virus, either. My case was triggered by a tetanus shot (the standard three-way pertusis/diptheria/tetanus vaccine). While exposure to a virus won't automatically result in a relapse, it's now a real threat every time. I personally will never get another vaccination of any kind. It's just not worth the risk for me. That's just me, I don't make recommendations for anyone else. (As my personal physician said, "Every time you get one, you roll the dice.") When I got sick last year I was relieved to find out it was pneumonia, because it was bacterial, and an antibiotic could deal with it. When I got a mild cold this year, I wasn't very sick, but I was pretty worried that it might trigger a relapse. Fortunately, it didn't. And no, the symptoms didn't feel like the GBS symptoms (several of which never went away), it was just regular cold-like stuff. Regular over-the-counter medications did OK for me.
I have another question. My doctor made it sound as though a relapse of GBS is so rare that the possibility of ever relapsing was not even worth being my concerned about. Is that true? If its so rare, then why are people so afraid of triggering a relapse? I am starting to think maybe its not so rare as I was led to believe it was. Maybe I should question everything I have been told about this disease.
I say no to flu shot and yes to cholesterol drugs. I can’t fine any evidence about cholesterol drugs and GBS. Just the “normal” statin problems. I agree with the "it’s a roll the dice " thing. My husband had flu shots for several years and never got GBS till this last one. And I got the same shot this year as he did, and I didn’t get it.
My wife has GBS just shy of three years now. We have been told by various doctors that you will not have relapse with GPS that happens with CIDP.
We were told under no circumstance should she get a flu shot. Her body is weakened now and can not build the resistance to viruses like a normal body can.
With that said you are asking people who have been through good and bad doctors and researched information on the internet that could be wrong. Make no decisions on advice from here but take the information to your doctor and have him answer the questions based on what he knows about you. If you do not understand have him rue explain it or have him write down words or references so you can study it.
What is a,azing for me, I have only had the flu one time since havimg GBS 30 years ago. I think my immune system is really strong now. but My numbness and tingling are getting worse as I get older.
The whole flu shot thing is ridiculous. In 1980 there were 31 case of GBS reported- a record apparantly. The only thing to which they could link all of these cases was that all the patients had received flu-shots. That was the only "proorf" thatg was done.
My first year out of recovery I did NOT have a flu shot. But man, did I get the flu. It was a lot like the onset of GBS. Myt temperature went up to 104 and for almost two weeks I thought that it would be better to slip back into a coma.
The following year I did have a flu shot. And I have had one every year since then. I do aknowledge on the paperwork that I am a GBS patient and am aware of yada yada yada, but I have NEVER had a bad reaction to the flu shot. No one knows what the hell causes GBS. I believe the major developing factor is a virus that attacks us when we are over taxing our bodies either through stress or arduous and emotional work. But not a flu shot. Nor a pnemonia shot, which I also had.
I've had flu like symptoms a number of times. For no reason my temp will shoot up and it is ALWAYS high 104 is not at all uncommon. But it passes in a few days and I treat it with Aspirin and advil.
One odd thing- and I'd love to hear if anyone elose has this: I have had a non-stop sinus problem since the day they took me off the respirator. I must ALWAYS blpow my nose and when my heae over heats, as my feet are freezing, the nose runs even worse. It's not congesti0on, just a very active sinus.
I am suirprised I don;t have pulminary problems. They went down there with a variety of vacuums 32 tyimes acording to my medical records- to say nothing of the daily suctions. Twice- perhaps three times) my plural ;lining filled with fulid and they had me lean over a table, tap my back with a needle and remove about 2 litres of fluid that looked like Hawaiin Punch from the plural sac. That was creeepy as I had to be wide awake for it. The Brochosophies (Bronchs) I was heavily sedated for.
The chance for GBS to return to you is as rare as winning the lootery or being struck by lightning. The flu shot is not at all dangerous and once your myelin sheath grpow back you're out of the woods for further nerved damage and only need be concerned about muscle attrition.
Have no fear there is lots of doctors in the house
Dave Noel S said:
The whole flu shot thing is ridiculous. In 1980 there were 31 case of GBS reported- a record apparantly. The only thing to which they could link all of these cases was that all the patients had received flu-shots. That was the only "proorf" thatg was done.
My first year out of recovery I did NOT have a flu shot. But man, did I get the flu. It was a lot like the onset of GBS. Myt temperature went up to 104 and for almost two weeks I thought that it would be better to slip back into a coma.
The following year I did have a flu shot. And I have had one every year since then. I do aknowledge on the paperwork that I am a GBS patient and am aware of yada yada yada, but I have NEVER had a bad reaction to the flu shot. No one knows what the hell causes GBS. I believe the major developing factor is a virus that attacks us when we are over taxing our bodies either through stress or arduous and emotional work. But not a flu shot. Nor a pnemonia shot, which I also had.
I've had flu like symptoms a number of times. For no reason my temp will shoot up and it is ALWAYS high 104 is not at all uncommon. But it passes in a few days and I treat it with Aspirin and advil.
One odd thing- and I'd love to hear if anyone elose has this: I have had a non-stop sinus problem since the day they took me off the respirator. I must ALWAYS blpow my nose and when my heae over heats, as my feet are freezing, the nose runs even worse. It's not congesti0on, just a very active sinus.
I am suirprised I don;t have pulminary problems. They went down there with a variety of vacuums 32 tyimes acording to my medical records- to say nothing of the daily suctions. Twice- perhaps three times) my plural ;lining filled with fulid and they had me lean over a table, tap my back with a needle and remove about 2 litres of fluid that looked like Hawaiin Punch from the plural sac. That was creeepy as I had to be wide awake for it. The Brochosophies (Bronchs) I was heavily sedated for.
The chance for GBS to return to you is as rare as winning the lootery or being struck by lightning. The flu shot is not at all dangerous and once your myelin sheath grpow back you're out of the woods for further nerved damage and only need be concerned about muscle attrition.