has anyone had relapses

    • Anonymous
      June 11, 2006 at 9:31 am

      I was diagnosed with GBS in March of this year. I had a good recovery time and was up walking and had my strenght back in 6 weeks. I am a Registered Nusre and work as a Direct of Nursing in a Long Term Care Facility. I returned to work part time and tried to build up my hours. My husband was diagnosed with CA of the lung and liver in January and is not doing good at all. Since the first of May I have episodes of slurred speech and trouble walking. The doctors feel it is the stress I’m under that has made me regress. I wondered if anyone else has or has had this problem.
      Mildred Winkler
      Broken Bow NE

    • Anonymous
      June 11, 2006 at 4:00 pm

      Hi Mildred,
      In my case yes. I was dx with GBS in 1998. I got better for almost a year. Then the relapsing started and has hounded me ever since. Its called CIDP for me now. I’m sorry you are having problems. Stress and worry usually makes mine worse. On a brighter note, I was scanning the tv one day, and came across a talk show with 4 people on it who had gotten over this malady. One girl had it for 10 years and it had stopped. The others, not near as long. It can be a wild and crazy ride, so hang on. I pray u and your husband will get better soon.
      God Bless

    • Anonymous
      June 11, 2006 at 6:19 pm

      Mildred, :confused:

      Not sure if I have had an official relapse, but I sure have gotten close to a lot of my original symptoms several times. I was not hospitalized at first, but I did have a slow and stready onslaught of bizarre symptoms. The relapses seem to be brought on by stress, which you have definitely experienced lately. I took a trip last year and tried to keep up with everyone the best I could. It took me a month to recover and I was pretty miserable — and I was scared.

      You have a lot on your plate right now and may have tried to be strong for your husband. Take care of yourself first so that you will be able to care for him. You have some important decisions ahead and you need a clear head and all your strength to make them. I’ll keep you in my prayers.

    • Anonymous
      June 11, 2006 at 7:49 pm

      hi mildred & welcome,

      it is most likely not a relapse, just your residuals acting up. you need plenty of rest lying down & much less physical work, etc. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      June 12, 2006 at 12:43 am

      Hi mildred, i’m sorry to hear you and your husband are having problems. you need to make sure you get enough rest so you can help give your husband a calm piece of mind. he is going through alot of stress and knowing you are under more stress doesn’t help either of your health. is there anyone that can come into your home to lend a hand to both of you?

      relapses are possible, i’ve had 4 since aug 05. you really need to concentrate on relaxing and resting. you need to repriortize your life.you can help your husband, but you also need to care for yourself. if you can get help with the house work, it would help alittle. stress levels for the 2 of you needs to be lowered, and you might be able to turn a relapse into a backwards step, its much easier to recover from a backwards step then it is from a relapse.

      i will keep you and your husband in my thoughts and prayers. if your slurred speech doesn’t get better, please have a dr check you out. take care.

    • Anonymous
      June 12, 2006 at 11:01 pm

      Hi Mildred and Welcome,

      Plenty of rest like gene said. I often get my residuals playing up when I have overdone it. It is easy to say rest but it is very important.


    • Anonymous
      June 13, 2006 at 12:42 am

      I’m a nurse also and unfortunately our work can be very stressfull. I’m 23 yrs. post GBS and residuals can really mess with you. You may have to cut back on your working hours if possible ; and I know you will get tired of hearing this but rest is the best medicine.I know during extremely stressful situations I too have had side effects kick up and sometimes they are hard to deal with. Check with your Doctor about meds to help with the residuals. I’ve had to take Zoloft, Predisone and Flexiril at different times to help me cope with symtoms. Also it helped me to change my pace a little in all areas of my life. It’s not as bad as it sounds, but it does take some getting used to… My prayers are with you and your husband. Keep me posted.Good luck…and if I can be of any help let me know.

    • Anonymous
      June 13, 2006 at 12:59 am

      hi anita, do you have any suggestions on good neuros in ohio? my neuro is good, but i don’t like the hospital she is at. and i don’t like the neuro at the hospital that i like. just in case i have another paralysis event i want to look into all of my options. since aug of 05 i have had 4 paralysis events requiring hospitalizations. take care.:)

    • Anonymous
      June 13, 2006 at 6:54 am

      isn’t flexiril a muscle relaxer?

      if you can add to this list of good neuros, pls let me know. i keep it handy for those who ask.

      SE Ohio in Zanesville Dr. Robert Thompson 740-453-0680 . He currently has at least 2 of us as patients. I believe that the more of us that go…[he] will know how to treat us. I was also on the Rehabilitation Unit at Genesis Good Samaritan Campus (hospital) 800-322-4762 in Zanesville, Ohio. They were absolutely the best. I was referred to Ohio State but was extremely dissappointed in my exam there.

      *NOT recommended – Clevland Clinic* I have seen about 10 GBSers at Clev clinic and could not recommend a single Dr. Not because they are not good but because none of them impressed me. If your ins. will ok you to go to University hospitals (right next to the clinic) I would highly recommend you to go there. The whole neuro floor is fantastic.

      In Akron call Akron General and ask for Dr Harvey Friedman. He was my Dr 23 years ago and in my opinion one of the most knowledgable in GBS. He has had at least 100 patients.

      take care. be well.
      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      June 13, 2006 at 8:38 am

      Dear Mildred:

      My name is Cara and I had a bout with GBS in February. I came home w/walker, went to a cane a week later, and now walk unassisted. I was feeling real real good memorial day week, and I think I overdid things. Needless to say, I was in the neuro’s office the following Monday scared out of my wits that I was relapsing. I was not, I had strength, but I had many abnormal sensations, including numb calves, tingling real bad, etc etc. Doc gave me nortriptylene, and I also was very very fatigued. I was on my back laying around all last week, and now this week I am much better again. Your job is physically demanding. In fact, I was a junior in nursing school when this happened, and I had to take a leave. I am also totally considering never going back after this happening. I am really down in the dumps about it, but then again I am happy I can take care of myself and my 2 young children already. Anyway enough about me, 😉 you take care of yourself and your husband. Get lots of rest, I know it can be hard to rest sometimes when surrounded by household chores that need to get done, etc, but just get some fave movies and spend the day on the couch. If you want to email me anytime, its [email]cara922@ptd.net[/email]. God bless you and your husband, and take care.

    • Anonymous
      June 13, 2006 at 11:05 am

      thanks gene, i wouldn’t go back to cleveland clinic, they did nothing to give me a second opinion except run the same emg/ncv and sent out 2 teaspoons of blood for muscle disease testing, and ran a urine test without me giving them a sample–surprise it was normal. my neuro was upset that a well known clinic like cleveland, didn’t spend more then 40 mins with me and gave me the same tests that were run time and time again.

      and yes flexiril is a muscle relaxer. i have used that in the past but it never did anything as far as relief for me. i use zanaflex and i have no sluggishness and it works well in controlling muscle pain and even helps me get sleep, and that is on the lowest dosage.

    • Anonymous
      June 16, 2006 at 12:09 am

      Hi Cheryl and Gene ; Flexeril works well for me. This is going to sound stupid be my muscles in my legs feel too short for the bones at times . LOL. It seems to help with that little problem. I too went to Dr. Freidman years ago. He was great. Now I’m with Dr. Ann McClain at OSU. She’s pretty good,at least she’ll listen. The best ever was Dr. George Perrine with Mount Carmel East. Unfortunately he’s is in California now. I wish he would come back to Ohio. I’ve heard some really good things about Zanesville . There is also a new Nero. Dr. Taylor who is supposed to be good. He is around the Grove City area. Out of curiosity does anyone else have that problem with that type of feeling in your legs or the sensation that there is warm water rushing down them ? Weird huh????:eek:

    • Anonymous
      June 20, 2006 at 4:02 pm

      My husband along with many here have the feeling that bugs are crawling over the legs and arms. Do you get that feeling?

    • Anonymous
      June 23, 2006 at 10:00 pm

      Hi Brandy; Sometimes I have a feeling like something is crawling on my legs. I get so many weird sensations in my legs and for so many years the Dr.s just kept telling me I would just have to adjust to it….. But it really gets old fast and very nerve racking at times !!!