Questions about having it twice

    • Anonymous
      June 23, 2007 at 11:16 pm

      When I was 5 years old I was diagnosed with GBS. It wasin 1979 and they did not have treatment back then. I got the chicken pox which the doctor think gave gbs something else to fight instead of my own body or nerve cells. I had to go through two years of physical therapy and learn how to walk all over again.
      This past November my started hurting. I thought it might be a pinched nerve or slipped disc from picking up my son and putting him on his bunch bed. Then next few days it got worse and I started falling. I went to the docter and y started running tests. Spinal results showed that it was gbs and start IVIG imediately. It didnt go as far as it could have gone only my arms, legs and trunk were effected. I went to physical therapy for about 6 months and still do excerises at home. I try to spend time meditating and
      I have migraines. I have fatigue. My feelt still kill me. Sometimes sleep 13 hours or more. I have 3 children under 6. The tingling in my hands and feet. Sensitive to sound. I am on Cymbolta which helps. I look forward to days and hate bad. And have been have been having bad lately than good. Right now my feet are killing me and I’ve got to preach in the morning. I thank God for the good days and pay to God help me get through the bad days.

      The question I have has anyone had GBS twice and what is the chance of a relaps after having it twice? What about nerve damage?

    • Anonymous
      June 24, 2007 at 1:06 am

      Hi Kinney, Welcome to The Family. Yes you can get gbs again. You need to see what your dr says about using ivig or plasma exchange, getting an emg/ncv test, and see if there is more nerve damage, to what extent and go from there. The ivig helps stop the damage to the nerves, so can the plasma exchange. If you have more relapses, gbs changes to a dx of cidp. or the chronic form of gbs. I have had 5 in hospital relapses since aug 05, gbs to cidp dx by my pcp. Therapy is recommended also, be it aqua therapy or physical therapy, but don’t over do it, that can cause a relapse also. recovery from exercises should be under 14 hours, if not then its too much and you would need to cut back and get alot of rest also. Feel free to ask as many questions as you have or just vent when you need to. Take care.

    • Anonymous
      June 24, 2007 at 8:23 am

      hi kinney & welcome,

      all that you say is normal for gbs. so pls do not fear anything. have you tried neurontin for your pain? many of us take neurontin [gabapentin], a non-narcotic, for peripheral neurological pain. neurontin is specific, it can work even when ordinary pain killers do not, even the opiates like methadone. great success w many. v safe. start at 300 mg 3X/day [900 total] & increase by 300 every other day till pain stops. taking it 6X/day instead of 3X/day gets more bang for the buck. 3600 is theoretical max/day that your body can absorb. 5600 is practical absorption max/day. the only reason for the slo build up is it may make you sleepy till your body gets used to it. you can ask your doc to use it in conjunction w the cymbalta. if you feel better, you can then see what happens if you cut down the cymbalta. the only thing you can do to help repair nerve damage is to rest. the more rest the faster the recovery. even so we can be talking months/years. a relapse is when you over do it so much that it feels like a gbs attack, but is not. for this you need big time rest. future real gbs attacks are as cheryl says. the only way to minimize them is to avoid the trigger mechanism that causes it. do you know what caused this 2nd attack? take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      June 24, 2007 at 5:20 pm

      [QUOTE=gene]hi kinney & welcome,

      all that you say is normal for gbs. so pls do not fear anything. have you tried neurontin for your pain? many of us take neurontin [gabapentin], a non-narcotic, for peripheral neurological pain. neurontin is specific, it can work even when ordinary pain killers do not, even the opiates like methadone. great success w many. v safe. start at 300 mg 3X/day [900 total] & increase by 300 every other day till pain stops. taking it 6X/day instead of 3X/day gets more bang for the buck. 3600 is theoretical max/day that your body can absorb. 5600 is practical absorption max/day. the only reason for the slo build up is it may make you sleepy till your body gets used to it. you can ask your doc to use it in conjunction w the cymbalta. if you feel better, you can then see what happens if you cut down the cymbalta. the only thing you can do to help repair nerve damage is to rest. the more rest the faster the recovery. even so we can be talking months/years. a relapse is when you over do it so much that it feels like a gbs attack, but is not. for this you need big time rest. future real gbs attacks are as cheryl says. the only way to minimize them is to avoid the trigger mechanism that causes it. do you know what caused this 2nd attack? take care. be well.

      gene gbs 8-99
      in numbers there is strength[/QUOTE]

      Thank you both for the information I have an appointment with neourologist on the 11th. Thank you for the encouragement and information. I appreciatate it.

    • Anonymous
      June 24, 2007 at 5:23 pm

      [QUOTE=angel2ndclass22699]Hi Kinney, Welcome to The Family. Yes you can get gbs again. You need to see what your dr says about using ivig or plasma exchange, getting an emg/ncv test, and see if there is more nerve damage, to what extent and go from there. The ivig helps stop the damage to the nerves, so can the plasma exchange. If you have more relapses, gbs changes to a dx of cidp. or the chronic form of gbs. I have had 5 in hospital relapses since aug 05, gbs to cidp dx by my pcp. Therapy is recommended also, be it aqua therapy or physical therapy, but don’t over do it, that can cause a relapse also. recovery from exercises should be under 14 hours, if not then its too much and you would need to cut back and get alot of rest also. Feel free to ask as many questions as you have or just vent when you need to. Take care.[/QUOTE]

      Thank you for the information and encouragement. I am trying to slow down and get the rest that I need now. I appreciate your advice. Thanks again.

    • Anonymous
      June 24, 2007 at 7:36 pm

      Oh Kinney!

      I am so sorry that you are going through this. It is especially difficult wanting to be there for your young kids. Please know that we are all here for you and ask any questions you come up with. If you need to vent, come do that too. It helps.

      I’ve had good luck with Ultram/Tramadol for pain and Flexeril for muscle strain. I’m dealing more with long-term residual stuff I think though -still figuring it out. Haven’t gotten any Rx for the fatigue yet, but have found that supplements really do help. I take: A mega-multi, omega-3s, C, a B-Complex, plus an additional Niacin supplement.

      Please hang in there and know that you are not alone. Please also keep us posted.

      Sylvia

    • Anonymous
      June 26, 2007 at 12:43 am

      Thank you Sylvia for the information and letting me know that it is okay to vent and that I come and vent and share how I am feeling and what is going on in my life and how I am feeling gbs, emotions,pains, problems, it means alot to know that there are others who know how it feels what you are going through.

    • Anonymous
      June 26, 2007 at 9:43 pm

      Big Hug. Hope you are doing okay today. Feel free to PM me anytime.

    • Anonymous
      June 26, 2007 at 9:56 pm

      Kinney,

      Just wanted to say welcome and hello. Nice to meet you and welcome to the family.

      Jerimy

    • July 3, 2007 at 3:16 am

      I see mentioned that overdoing things can lead to worse resids…so I am over here freaking out about my feet feeling awful and my throat/neck being funky all of which could very well be due to lack of proper sleep, painting a house, cleaning a house, stressing about whether it would be done for hte kids to love it when they got home, going about 12 hours a day each day and not being able to fall asleep till after 1 am…only to get up at 8 and do it all over again. I am in a tizzy over how bad I am feeling and so freakin scared it is a relapse. How do i get some rest?? I can hardly sleep. Ive been praying, trying to relax, and I feel as if I am coming apart at the seams. I have no doctor here, no insurance anymore, dont know a soul except my hubby and kids. I dont want to complain to hubby about how awful I feel cuz I dont want to sound like a whinrer (and here I am typing away and sounding like a whiner). I was doing so damn well and I feel like I have taken so many huge steps backwards. I want to live a normal life again, be done with this, I guess all of us do huh? Right now I have a lot of opportunities and a new life to start living. I dont want to feel this way anymore. Maybe I need to somehow take a couple of days off and sleep as much as I can and rest by hanging out at home with the kids or something. Noe if ony I can figure out how to relax enough to do that.

      Anyone know of any good dr’s in Idaho? Caldwell, Nampa, Meridian? Or a place I could call or go that would not look down at me for no insurance? I guess I need some reassurance or something.

    • Anonymous
      July 3, 2007 at 8:25 am

      fairly odd mother, get an Rx for amitriptiline. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      July 3, 2007 at 10:50 am

      Lori, Check to see if there is a clinic near you. Or you might want to ask John Fitzen where he goes-he lives across from you in Pocatello. The technique I use when I’m feeling overwhelmed with daily living, the house work and the kids, is I make a list and put a number next to the things that will be there tomorrow like, housework-can be done anytime, which means a low importance rating. The kids-get a high importance rating-all the time, you don’t ever know what tomorrow will bring and you don’t want to miss out on their lives. The rest just falls into place after that, it is hard to begin but it does get soo much easier after you get into a routine. The first thing I would focus on is yourself, without you being in good enough shape to enjoy life there is no life. Your kids and family need to understand and be told how you are feeling, don’t just assume they will know and recognize the problems and feelings you are experiencing. Be the advocate for yourself, in the long run you will get the support and help that you so dearly need from your family. You aren’t superwoman, none of us are, don’t feel that everyone expects you to be. Its ok to let things go until tomorrow, or the next day or the next day-there are no rules when it comes to housework, and so forth, the house isn’t going to explode if you don’t scrub the floors by 3 p.m. or anything like that. Concentrate your energy on the things that really need your attention-yourself, your family and then if there is left overs your housework. Do small things at a time, cut your housework into sections(easier said then done-I still haven’t got that down yet) you also need to have help from the rest of the house occupants, unless they are in diapers-then they are excused. Focus on your well being first, once you are under control of your body’s needs then the rest is a piece of cake. Please take care of yourself. Big Hugs!

    • Anonymous
      July 3, 2007 at 12:03 pm

      I was diagnosed with GBS at the age of 2 years ols in 1974. Yes there weas no treatment and it was almost impossible to figure out what I had going on. Almost three years ago I had my 2nd onset. It was not as severe but I continue to have extreme fatigue and pain in my legs. I tried Cymbalta but am more successful with neurontin. My EMG test continue to show improvement but there are days that I still have extreme pain and fatigue. I am still working on things wiht my dr but it has been a long road. Enjoy the good days! 🙂

    • July 3, 2007 at 12:08 pm

      oh angel you made me tear up….I have so wanted our own place for so long and now that we have it I want to be superwoman and make it perfect. I tried that during my first marriage…after the divorce I had to go back to moms (no work history to fall back on at the time). Which worked out because I realized who I really was. Even though it also meant taking care of her and 3 kids for the next 6 years (which I had done for a very large part of my now 37 years). Anyhow, I guess taking care of everyone else has always been at the top of my list. When i got GBS I felt so incredibly helpless and vulnerable and it was very very difficult for me to realize that my family actually wanted to take care of me and help me…and I didnt even have to ask, although they usually waited for me to do so since they all know how I am about such things. It was difficult asking for help, and I often cried because of it. I learned from that, and it was getting easier to depend on others. Now that things are moving at such a fast pace I feel I have to keep up and get it all done TODAY! You reminded me that I dont. That I matter still and always have and I can take a break and take care of myself without things falling apart…which is kinda funny because yesterday I actually said something to hubby like “You have to get back to work (he took a couple of weeks off to help get us moved and help get hte house in order) and I have to hold all of this together (gesturing to all around us)”. I guess I grabbed a hold of my “have to do it all now” bad habits, eh? Today is a day of rest and hanging out with the kids and staying off my feet. I feel better than I did last night but still feel worn down immensely.

      Thank you for the reminder. You really do understand and I feel focused now! HUGS!

      Gene—amitriptyline (sp) can I take that on top of wellbutrin? I have several bottles that are unopened and not expired. The relief would be so wonderful!!

    • Anonymous
      July 3, 2007 at 4:00 pm

      Fairly odd mother –

      I know exactly how you feel!!! we just moved too, and my resids are the worst they’ve been since last august!! Very run down, in pain, feet on fire , etc etc. I am seeing a new neuro in two weeks. I feel better today after rest much more than usual. You are right, I just want to make the new house look perfect too!! but it has caught me!! 😉 Here’s to Resting up 😀

    • Anonymous
      July 3, 2007 at 9:41 pm

      fom,

      better check w your doc 1st. as you obviously know both are antidepressants. but the thing abt ami is that it is also a gbs pain killer & a great sleeping pill. take care. be well.

      gene gbs 8-99
      in numbers there is strength