• June 24, 2009 at 8:58 pm

      OMgood gravy and mashed potatoes!! I have allergies so bad that I am beyond miserable. I have apparently been suffering from various degrees of it for about 2 years now, the dr put me on 4 different meds to attack it from 4 different directions, including allergy induced asthma. Anyhow I started acting so horrible that my family was complaining of my mood swings, I bloated, I started hating myself and could not figure out what was going on. I stopped taking everything so my family wouldnt desert me or disown me. For awhile i was okay, at least tolerating it, but now it is so bad my eyes feel like sand paper, the back of my throat is inflamed, cant breathe thru my nose, itch itch itch…you get the picture. Now for my question…since allergies are an auto immune response, and so is GBS, is it wise to seek allergy shots?? Or would/could that send things into serious overdrive?

      Also, how incredibly difficult is it to qualify for disability with GBS? I am not in a wheelchair or walker, I can walk on my own and on most days am functioning at about 70% or so. I do tire extremely easily, my legs scream and my feet hurt, some days are better than others….if I do too much today I am guaranteed to be down for 2 days at least. My Nerve test showed problems, and I will be at the 3 year post mark this July. I am finally at my breaking point and ready to cry Uncle. Even trying to work on my art sitting at my desk for any length of time send my legs into an uproar. I feel like people think I am making this stuff up, I dont like turning things down or not committing to something because I dont know how I am going to be feeling health wise.

      On a lighter note though, I applied for a spot in an upscale boutique in downtown Boise to sell my digital artwork and was accepted! I have 10 prints for sale and I am so excited and proud. They turned out amazing. So far no sales, but I am still crossing my fingers. You can also see my work on my website (still trying to get it all set up and finalized) I am still trying to get out and take photographs and do something with all that. So many people encouraged me to start selling my work so I finally decided to take a chance.
      photo of my daughter:

      digital artwork entitled “Who’s There?”

      I still keep everyone in my prayers and hope that it is quiet on the boards for a good reason. I know things are tight and scary right now…we are dealing with it in a big way…I pray we are all able to stay strong and see this through. God Bless!!

    • Anonymous
      June 25, 2009 at 7:11 am

      Wow! What beautiful artwork you have there! About the allergy shots! Since you have had GBS it might pay to talk to your doctor about them first and see what he reccomends! It’s not a vaccine but might react a certain way that effects each person differently!

      I have asthma and allergies really really bad along with it being CODP! I am on Abuterol Nebulizer and Abuterol Inhaler along with Symbacort Inhalers. Ot makes me jittery and nervous and gives me mood swings. I take anxiety medication and that helps out with the jitters that the asthma meds to do me!

      I don’t see why the shots would be dangerous but me not being the doctor here I hate to say yes and there be something in the drug that could cause GBS. But the allergy shots are not a vaccine and more medication than anything else. Almost like Benedryl but a little different from that!

      But you do need to take something for that! Allergeries and Asthma both can kill a person if the attacks are really strong. I landed in the ER several times because I could not breathe and had to have treatments. That was getting expensive too! So now I have my own nebulizer here! And have only seen 1 ER visit so far this year due to it! Much better than 7 visits a year!
      Linda H

    • Anonymous
      June 25, 2009 at 10:35 pm

      Hi FOM: I am sorry to hear about your allergies. I have had colds for the last five months and it has been miserable. I just found out that I had a bad tooth infection that was very near my sinuses and am hopeful that was the cause of the problem. I think if you saw a good allergist and told him about GBS you might have some luck. Unfortunately in my experience most doctors don’t know about residuals or don’t care about them. Even the doctors expect that we should be all over it years later and only a few get what residuals do to us. I am like you. I love to write and be at the computer but after an hour at the most my legs kick in (no pun intended) and I can’t stand the pain. I have learned to write lying down.
      I love your art work. What a blessing creativity can be, even in the hard times. You are lucky to have something to work on and with and it is wonderful your work has been been accepted. I hope you keep at it.
      Disabilaity is very tricky. Even with severe current illness you can get denied. A friend of mine who went through the process found a lawyer who specialized in medical law and he guided her successfully through the process. If you have a doctor on your side that too will help. It is all about giving the bureaucracy what they need. Residuals are hard to describe, but chronic pain and fatigue might do the trick. Good luck. Jeff

    • Anonymous
      June 25, 2009 at 10:40 pm

      AWESOME ART Laurie!!!!!!!!:)
      You need to talk with your allergist dr, hopefully he/she knows about gbs also. They should since its an autoimmune reaction of sorts, their specialty in some ways.
      I hope you get relief soon, Hun!!
      Way to Go with Your Pics!! Keep It Up!!:cool:

    • Anonymous
      June 26, 2009 at 6:07 am

      I think you will be ok w/ the allergy shots as viral antibodies that attack our myelin are different from antihistimines which are mostly produced with allergies. Both autoimmune diseases but different chemistry. Its been offered to me and they said it would be ok but my allergies went away again. The only thing I could be cautious about are the inhaled steroids frequently given to heavy allergy sufferers (Flonase is what my hubby uses). I’ve had half the doctors say it won’t effect you internally and the other half say it does get into your blood stream. Considering how often my husband gets sick I’d say the inhaled steroids are likely getting into his system. Considering how complex this disease is I’d try to avoid inhaling immune suppressants if I were you. 😉

    • June 26, 2009 at 11:43 am

      thanks everyone…

      Julie, I was on Nasacort. Other than moods I didn’t notice anything out of the ordinary. I agree that it HAS to get into your system…it goes down the back of your throat, and has got to be absorbed thru the mucus membranes at least.

      Now another question about the inhaled steroids…I am thinking I may have to go on a real inhaler, is that okay to use??

    • Anonymous
      June 26, 2009 at 10:39 pm

      Hi FOM!
      I have allergies too and was/am on Nasacort as required. I saw a spoecialist who had prescribed it and he gave me some pointers on it. He said it does you no good when it runs down the back of your throat so he had me hang my head down for a minute after taking it so that the meds would stay in the sinuses and nasal cavities. It was so much more effective when I did that. give it a try and see if it works for you.

      Good luck…and what beautiful art work! I am so glad you share it with us.

    • Anonymous
      June 28, 2009 at 2:52 pm

      Hi FOM, I think your concerns about allergy shots are completely understandable. I developed adult allergies, after believing for years that I had no allergies. My GBS 2 year date is coming up. I did not have medical intervention because my case was so “mild”, however, recovery has been slow, painful, and at times very discouraging. Eight months ago I saw a doctor who started discussing food allergies. I thought the guy was a quack. But in desperation, six months ago I began the time consuming process of an elimination diet to see if I could get a more complete recovery. To my shock, eating dairy and wheat products significantly changed my neurological responses and residuals. My recovery started up again with noticiable speed after a month without those foods, after stalling for about a year. At some point I started switching to many corn products. Big mistake, I was soon experiencing pain and an increase in residuals. My last three months are hopeful, again. I, too, was about to “accept” a fairly restricted life style. My food allergy problems seem to center mostly around grains. There is a great book called, The Complete Food Allergy Cookbook, which has a thorough explanation of how food allergies effect the body. I found it very helpful. Others may have also found that certain foods really effect their nerves after GBS. I am still in shock with how avoiding three foods can make me feel so good. I feel lucky to have some control over my post GBS body. If you decide to try something like this, it is a bit jarring physically at the beginning (I felt very sick the first week I stopped eating these foods), so anyone trying this might want to have a doctor involved. Good luck! I’m paranoid of all shots at this point! Luv2Sail


    • Anonymous
      June 11, 2006 at 4:32 pm

      I am new to this site. I have had CIDP for 4 years. I think I might be in remission. My Neuroligist said I may never have another instance of it. I hope he’s right. I have a question for you: Have you found yourselves becoming allergic to more food things than you were before? I recently had an experience we think due to kiwi that I ended up in the emergency room. I now have to carry an epikit with me.

    • Anonymous
      June 11, 2006 at 4:48 pm

      Greetings from Music City,
      I’m allergic to the envioment, but not foods. I was cruising the other day in my powerchair at walmart> (Looking over my shouder for this chick that has been stalking me, her name is shannon if u see her, don’t tell her u saw me.)
      here is that story, just down the page a bit if u got a min.
      This kid asked me what that hankerchief was tied to the top of my flagpole. It was red, he musta thought I was ina gang. ha
      I looked at him an said, “thats a snot rag boy”
      so, wat u up to girl? u are a girl?

    • Anonymous
      June 11, 2006 at 9:07 pm

      I have environmental, seasonal, and one food allergy. All were present before the GBS. The one food allergy I have is Kiwi fruit. I haven’t noticed any new allergies yet. I am 13 months past my GBS onset.

      God Bless,

      Tonya Correll

    • Anonymous
      June 12, 2006 at 12:16 am

      hi elaine, developing more or new allergies after gbs/cidp, is normal. it is just another autoimmune response from your body. back a few years when i was 21 i was tested and found out i’m allergic to my own body! its true! i’m allergic to the histamines my body produces when the levels go excessively high. i have noticed i don’t have a big problem with that reaction since my 1st gbs event last aug 05. but i did die from an injection of nubaine and ever since 99 i have acuumulated a list of meds that i have allergic reactions to–right now it stands at 29. take care.:)