How Much Dr Prescribed Pt Is Enough

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…..

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)!

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?

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?

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.