How Much Dr Prescribed Pt Is Enough

    • Anonymous
      August 28, 2010 at 5:54 pm

      I have had GBS for nearly 46 months on 9-10-10. And I was wondering how much dr prescribed pt is nessecary. I just finished a round of pt for my back condition in in June. Before when I was going to pt for my GBS , a year ago , I was told that there is nothing they can due to make my sensory & balace issues & propreoperception get better , or back to normal. When I was there for my back I asked the therapist that was working with me for my GBS & told him how long its been , I asked him if it would come back , since its been so long. I had the top neuro in the state of Ohio tell me that im as good as im going to get, that was last fall. & at the end of June I was talking with my neuro after being examined, & he said I was as good as I was going to get. When he seen me when I was sick, he told my family that I was the worst case he has seen in his career, & that I would never get out of bed. Well I made it to where I can walk with crutches (forearm), & I need help with some daily care & household. So I have home health girls for that. I do get out & try to walk weather permitting & try to work in flower gardens, & I walk when I go to my DRS. MY neuro told me Im in the 20 percent group who does not make a full recovery. I would rather be like this than as my mom says its better than the alternative ( which is not being here at all).
      I just don’t know how much & for how long you need to do PT from a drs prescriptions. All thoughts & ideas Greatly welcomed.

    • Anonymous
      August 29, 2010 at 10:50 pm

      There is nothing THEY can do to make you better. That does not mean you won’t get better in that area…it just means THEY do not have any more answers. So you find someone else …check out the Egoscue physical therapy methods…just a thought. It worked wonders for the golfer, Jack Nicholas.

      The doctor said it was the worst case HE has seen in HIS career. How many patients has HE seen?? Maybe if he were a better doctor, your case would not have seen that bad to him?? Maybe they say that to save their butts in case THEY can’t get you better!!!

      You’re in the 20% group that does not make a full recovery? Hogwash. Full means 100%. As we age, we are rarely at 100%. What if you recovered 90%? That would be good, right? I think there should be a law that allows us to kick any doctor in his shins that takes away our hope!! And we should publish in a newspaper what they said and then how we proved them Wrong. That might make them think twice about being so negative. If we tell our bodies what we expect to happen, it will try to comply. Miracles happen all the time. But, not if you listen to your doctor. I had a doctor tell me I had fleas and it was shingles!! He could not explain how the fleas were smart enough to follow the nerve pattern from my ear down my chest. I keep the prescription that he gave me for flea powder to remind me that doctors can be wrong!!!

      I had 8 different doctors tell me I needed a hysterectomy for typical perimenopause symptoms. I said NO to all of them and I was right. Fifteen years later Dr. Christian Northrup on PBS said many of the hysterectomies are unnecessary. Doctors are not gods…and we have to stop thinking they are. And they are not psychic to “know” how well you will recover.

      As for the PT…I could not stand for 4-5 months so I crawled on the floor at home. Actually I “scooted” for the first month because my legs were too weak to crawl. This was all the PT I had….I worried that after that amount of time, I wouldn’t be able to ever stand again because not having PT would allow my muscles to atrophy. Nope. Of course when I finally stood, it was only for second….but I stood. Then a few more seconds each day. I took it slowly. I know that people on this site getting PT have said that they do it through the pain. I took it slowly. To me, pain is your body’s way of telling you to stop.
      Hope this helps…..

    • Anonymous
      August 30, 2010 at 8:24 am

      I came down with very acute GBS 35 months ago — where I could only move my eyeballs.

      I wouldn’t have believed then, or a year later, or a year later after that, that I would still be rehabilitating after 35 months. But that is the case. I keep doing it because first of all, I do like to exercise for my physical AND mental well being. But I am also happy to do it because I am still seeing progress.

      So that is my big question — do you continue to see progress? If so, you are doing something right that is worth continuing. Even if not, PT could be useful, and perhaps it is a different approach as that is needed, as said by Carolyn.

      The thing is certainly to not give up hope of further recovery. I believe that when I hit 46 months I am still going to accomplish many things that I can’t do at 35 months (and I am not so young anymore – I am 51)!

    • Anonymous
      August 30, 2010 at 8:37 pm

      My neruo has been a dr for a # of years & has seen alot of gbs/cidp patients he works at our local hospital as well as a metropolitian hospital up north in a bigger city. the top neruo in ohio he sent me to works at a metroploitian area & has been a dr for a # of years & has seen alot of gbs/cidp patients. & my family dr. has seen some people with gbs they all 3 agree. they are all good drs & know what they are talking about. My family was told i would never get out of bed , however, I am walking with arm cuff crutches now !! My balance & proprioperception are a great deal gone. I have not progressed in 2 years. With theraphy around that time I had hit a plateu & have not got out of that plateu, nor have a progressesd for a long while. my mom says not getting worse , nor better that i’m stuck.Since family was told I would not get out of bed & i am walking with help I am better, however I cant feel my hands nor feet everyday, however some days its more severe. I have faith in my drs. all the ones i have seen & i trust them & they know what they are talking about in my case. My family also agrees.
      In theraphy for my back & while i was going for gbs i did balance board they set goal for 5 min & after a few mins. i was down there was quite a few times therapist caught me. because couldn’t see feet. I also went & had a functional capacity test done & i tried everything they asked , but there was alot of things pertaing to balance they had to catch me. unless i’m looking in the direction I’m going I lose my balance I use my eyes for everything now, to keep me some what on my feet. I suffered from drop foot on both feet left worse than right I have to wear braces in my shoes up around ankles to prevent lateral bend, if i dont have them on i will break foot or ankle, its true i broke my right foot in jan.10 & it took it 6 months to heal because of the gbs. My Drs. even said thats why. that includes my foot dr. & my neruo, family dr,.

    • Anonymous
      September 3, 2010 at 12:54 pm

      Well Istaroaz, I had some of the same problems as you, but luckily for me, my body has seemed to heal faster. I can only say that your spirit and determination are awesome. It is fabulous that you surpassed some of the expectations already. I hope you keep that forever because it will certainly help you mentally even if things proceed slowly or hit plateaus physically. How is your recovery in the upper body, arms and hands?

    • Anonymous
      September 4, 2010 at 3:59 pm

      my upper body pretty good I do wheelcair push ups able to lift butt off seat.. get down on floor do girl push ups. arms pretty good .. drop stuff alot because i can’t feel. able to use both hands .. don’t use left as much ..when relaxed i keep left hand in a light fist.. got the shake weight to work more on my arms.
      it won’t bother me to much if i have to use crutches to walk.. i have severe balance issues. & wear braces in my shoes that go past my ankle just to crew sock height.this prevents lateral bend on ankles have no control over them. only downfall i have to wear braces with a good pair of high tops & they make my feet hot then hurt like no end. !!
      emotionally i’m learing to accept the fact this is how i am .. & learning to find my new way !! My parents & a couple aunt & uncles have accepted this & they know i need to learn to accept this.. & I think they know i’m trying. I try to keep busy unless i fall asleep .
      Still have to take my afternoon nap. get exhusted if i don’t..
      have excersizes for my back to do. & remembered some from theraphy that i can do at home. Usally go for walk outside with home health girl. they are very helpful.
      I get my short circuts all over my body when trying to relax. they are irritating !!
      i type with a pencil & use my eyes to find letters.. even though i know keyboasrd. don’t have dexterity to type with handsi’m trying to be as positive as i can.. & learning my new life !!

    • Anonymous
      September 6, 2010 at 3:27 pm

      Hi Istaroaz, do you know why you have a GBS dx and not CIDP?

      I’ve only seen two other people on Forum with symptoms that match my daughter’s, one man and one other 30’s woman besides you. My daughter’s dx is CIDP. Do you get Ivig or Plasma Exchange, or oral meds, or both? Just wondering. You’ve had dx 2 years longer than she, symptoms started 1/08, but no one paid attention to her symptoms until about 7/08, at which time she could not breath!

      Would be interested in knowing. Did you go to Cleveland Clinic?

    • Anonymous
      September 15, 2010 at 4:33 pm

      my neuro examined me when i was real bad & he told my family i had gbs. then when i became more aware months later my family said the dr said gbs. i was at union hosp for 3-4 days before they consulted with neuro as soon as he seen me he knew what i had & transfered me to aultman hosp. there i had 5 rounds of plasmapharesis. i now take lyrica & baclofen for my gbs. i never was at cleveland clinic. however last summer 2009 i was sent to a top neuro in the state at case western university hosp. to make sure nothing else was going on. & to make sure it was still gbs.


    • Anonymous
      September 16, 2010 at 11:18 pm

      My daughter gets PE 1 x 3 weeks, but has had sets of 5 several times over the last 2 1/2 years. There is improvement after the set of 5, but the 1 x 3 weeks is ‘maintenance’. She has had little improvement over the last year, still is pretty much in a wheelchair, power or otherwise. She had also lost use of her hands for quite a while and for a month or so her diaphragm did not work well and her blood gases were out of whack.

      The PT has stopped long ago. In fact, she broke an ankle and they want her to go back to PT but it is extremely hard on me to get her there. We can do PT at home.

      Did you have a lumbar puncture? Still just wondering how they came up with the GBS diagnosis. Case Western is an outstanding think tank, I did not know they had a full hospital, although I know people who’ve gone there to study medical specialties. I am originally from Cleveland, that’s why I asked about the Cleveland Clinic. So, I am sure you were in competent hands.

      I PM’d you with some other questions too. You are workig hard physically with what you describe. Glad you can have people come in, I have no help with my daughter and have to work, too. But others have the same hardships. Hope you are getting SSI, too.