I had a severe case of something in between GBS & CIDP, although my original dx was GBS & then changed 3 months later to CIDP. I have always heard that it can take 1-3 years to make a full recovery from GBS. Having said that, I don’t believe that 85% make a complete recovery, as they are now finding that fatigue is a residual suffered by many more than that. I am almost 9 years out, wear AFOs & a cane to walk, use a wheelchair for distances like a museum, my balance is terrible, & I need at least 12-14 hours of sleep a day. I guess I just got used to it; what one is left with becomes your “new norm” after awhile. Wish I had more positive news to report.

Hello Jack, I am 53 years old and got it around the same time as Dean. I too had the back pain that was unbearable. Lost alot of sleep cause of it . I finally got the hospital to change the matress. Mine came on like lightning.
The first hospital I went too didnt dx me . So I went to Uof M the next day and they figured out what I had right a way.My feet hurt so bad at the start that I wore my tennis shoes day and night. I have slight drop foot now. I wish someone would of pulled my feet . But in reallity I didnt want anyone to touch me ,because of the needles that would result.Everyone is differnt in their recovery.I am back to work with great pain in my feet. But o well it hurts when at home too,so I might as well be making money with my soar feet. What helped me was a close friend had it 10 years earlier , and he called me alot and visited and would asure me that it does get better.
Tell your brother that we all said we know what he feels and it does get better.
Ron

I had a suspicion from the beginning that what he had was GBS & not CIDP. Now to hear it confirmed makes me so happy! As I wrote to you before via PM, I am not one for unnecessary testing, especially when it comes to children. I am glad you were strong enough to question everything the doctors were saying, as some of it did not make any sense to me.

How lucky your son is to have had such a strong advocate, and how happy we are all to know that the worst is over & he can just go on & lead a normal life now. How much I wish that for everyone who ever comes on this forum. Best of luck always to you & your son…
Pam

Parts of your health problems sound like they could be GBS, like the numbness, fatigue, weakness, tingling, etc. Also, the time frame going downhill, reaching bottom & then getting better sounds like GBS. But the parts about the heart problems, blood pressure, lack of control of urine, color of feces, & many other symptoms do not sound that much like GBS. It is possible that you might never know what you had, but just feel doubly blessed that you seem to be better now. I would guess it was something neurological though, & I am so sorry about the treatment you received from all of those doctors.

Hi Michelle,
How do you know if it is GBS or CIDP? What makes you think that is fatigue? I am going through the same dilema with my son and I as well as the doctors are debating if this is residual or CIDP.
Thanks,
Dawn

Hello Gene,
I just wanted to welcome a fellow New Yorker. I am out on Long Island, the home of the Smithtown Bull! Once in awhile this foundation will have a meeting at the Lighthouse School for the blind in NYC. We are welcome to attend, it’s put together for us. The home page (not our forum) should have a link that tells you when and where the meeting are.

I have CIDP and cannot really relate to GBS.

Dave,
First off, welcome to the forum. I live in Virginia, MN about one hour away from you. I came down with a very severe case of CIDP back in March of 2002, deteriorating very rapidly to a quad staus by the end of April 2002. I had been diagnosed with GBS at St. Marys Hospital in Duluth on April 4th, given 5 plaspheresis treatments, & sent home. It was after that I really began to deteriorate & was taken by ambulance to Rochester, almost completely paralyzed. But after a month down there I was rediagnosed with CIDP.

After 3 months down there, I was told there was nothing more they could do for me, as I had the progressive form of CIDP & was refractory to all of the normal treatments. I switched from Mayo to Dr. McGee at St. Lukes in Duluth, who soon realized that I was beyond his care. After two letters, he got me in to see Dr. Parry at the U of M, who was finally able to help me. BTW I would strongly recommend Dr. McGee as a starting point if you suspect CIDP, as he is actually quite knowledgable about this illness.

I have been on this forum for over 4 years now, & read posts daily. I do not think you have or had GBS, but CIDP is still a possibility. Do you have weakness symmetrically in your body? Did your symptoms begin in your feet, or in your hands? Do you have numbness along with your pain? You talk a lot about joint pain, whereas most of us have pain resulting from damaged nerves. I am tired (fatigue is another major issue), but would be glad to help answer any of your questions if you would like. By now, I think I know a lot about this illness. Feel free to email me at [email]mhauts@mchsi.com[/email], or if you would rather talk on the phone, email me your phone number & I would call you.
Pam

got luck with your new DR. know what you are feeling pretty bad when you DR. tell you (me) HE knows nothing about GBS he only had about a half og a page in med school. HEREs hoping you get a smarter DR.

Hello Annie,
It seems like the first thing you have to do is prove that your husband has GBS. If you can get to the doctor or to the hospital where your husband was diagnosed, go there and PICK UP THE PAPERS YOURSELF. Don’t wait on mail or faxes to be sent, you’ve found out what happens if you do that. I believe as his wife, you have a RIGHT to get them.

[QUOTE=Patcheswife]Thank you for the welcome Angel2ndclass22699. My doctors office called back today and now I am really angry. My doctor told the nurse that I don’t have GBS and he refuses to do any testing. I have been going through this for ten years for nothing? I don’t know what to do next. I can’t seem to get him to listen to me. I guess I will take a breath have a good cry and then wait to see if anyone here has any suggestions.[/QUOTE]
I am just recovering from GBS. It starts as a pins and needles in your legs. Eventually it goes up your whole body, and can shout down your breathing. This can happen within days, and usually does. I lucked out and it was stopped before it hit my lungs.That happened at the end of Aug. I came home from the hospital and rehab, after 6 1/2 weeks. I am now using canes to get around, plus a wheel chair. GBS patients usually make a full recovery. If you have been at this for 10 years, maybe you have a pinched nerve somewhere

I was just curious as to how doctors who admit that they have not treated much GBS can Dx someone with the ASMAN form of the illness. Also, how can they tell that she has axonal damage so early on? I agree that this illness is not one that people recover quickly from, but they seem to be all doom & gloom for one is so young & healthy to begin with. These two things are very much in her favor as to what her recovery will be like.

yes, i try to help the chemo. patients as much as possible; holding their hands through the process. this website has been a god send to me. i wish i could actually meet someone, face to face who’s going through this. i haven’t found anyone close enough yet to do so. i think i actually sleep better at night, after reading the forums and comforting words from others. stay well.

Hi Eva,

I certainly dont have any answers for you, but I do empathize. This forum has been great for me, as I have found answers here and support from people that I have never met in person.

When I broke my neck in 2000, I too had a morphine patch (actually fentanyl, brand name Duragesic). It was HORRID. Never again. But doctors also tried many different approaches for pain, especially after I rebroke my neck in 2001 (yikes) and had a great deal of scarring and nerve damage from that injury.

For what it is worth, I went on to learn to walk and even run again (had to prove the Neurosurgeon wrong by running a marathon even). This certainly didnt happen overnight … it took me 3 years to turn my life back to the positive. Luckily, I was able to get back into shape, get back into working (luckily, after three tries, I now love my career path), go back to church (a turning point for me), and even get married, and now have a toddler around the house.

All this to say, a few years ago, I thought my life was worthless. I can’t say what did it, but things definitely turned around for me. My point is that, 6 years ago, I thought my life was over, but instead it was just beginning. I simply couldnt see the light at the end of the tunnel.

My luck, I “caught” GBS in 2006, very mild, and have struggled again through additional nerve damage, pain, and fatigue. But, no matter what happens, I know that there is a light at the end of some tunnel. Heck, I have no idea where that tunnel is or in what direction it leads, but I know that it is out-there, somewhere, and I just have to find it. Even in our darkest hours there is always hope. Please believe that.

The people on this forum are amazing, and have a wealth of knowledge. I, too, cannot take Neurontin as I am allergic to it in some manner. But there are other things I have found to help with nerve pain (Bio-Freeze on the skin reduces pain substantially for about 30 minutes during flare-ups).

Hang in there, and know that you have a whole gang of people here who support you and understand much of what you are going through.

Wishing you the very best,
Swimm