Hey, thanks for the information. I read the information on the website. I told my P/T on Monday and he agreed to look it up as well. I go tomorrow and will see what he says. It sounds interesting. I wonder if it’s something that might help my situation with the drop foot and swelling and lack of circulation in the leg, ankle and foot b/c of the nerve damage. My right foot came back somewhat but the left side is just not cooperating. will let you know what i find out, thanks again, carole

have you tried gabapentin (neurontin)? pain never goes away but it will give you periods where the nerves calm down somewhat and dont jump and twitch and burn. but my pain has never gone away alltogether. tried to get off gabapentin and went right back to it when I was almost off it altogether. the pain was too much to handle

try and reach out to your town’s Access a Ride program. contact the dept of social services in your area and get numbers for help for the disabled in the town. also, if you are 60 y or older (?I’m just saying….) contact your local Dept. of the Aging. They have a wealth of resources.

wish i could join you too. I am about 3-4 hours away in Carmel, NY. Way deep in the woods! but lots of beautiful lakes. Boston is ok. have you been to quincy market? take a ride over to the cape if you are there long enough and are able. It is very pretty and the sea food is fresh and delicious!

suffered from lots of stress due to family drama and caring for terminally ill husband. started feeling fatigued and severe depression. was at hairdresser and one customer coughed constantly without covering her mouth. 2 days later, i had bronchitis. I coughed so violently that i thought i broke a rib. 10 days after onset of bronchitis, i felt tingling in fingers, then entire body felt numb with tingling. legs went out from underneath me and I fell flat out on the floor. was taken to hospital and after tests and spinal tap, diagnosed with GBS. within 24 hours, lapsed into 6 week coma. developed hemolytic anemia and went through 4 courses of chemo. when i finally woke up, was trached and could move eyelids only. drs said they suspected bronchitis and low immune system due to stress as cause.

I forgot to add to the above reply: when interviewing the physical therapist or talking to the visiting nurse do not use the word Plateau when you discuss treatment. That will turn them off right away. Let the pt decide if she has plateaued or not b/c he will have to measure her movements and decide if pt will improve the measurement. it isnt over until its over and dont let them tell you differently.

Before discharge from the hospital, the social worker must come up with a treatment plan for the patient’s care at home which should include follow up by the visiting nurse service or county hospital service. and it is the social worker who is responsible for setting this up and checking with insurance which should pay for this. the visting nurse then will should ask about in home physical therapy which the ins. should pay for, she can set up meals on wheels for her (you only have to be 60) and she can arrange for a social worker to come to the home to help with other issues. Try to research a good physical therapist near her home that you can take her to outside of the home. insurance wont pay for in home and outside so decide which is better for her. if you find a pt you like, as if they work with gbs patients b/c the damage is neurological, not orthodpedic. ask your mom’s primary care dr to write presciptions for physical therapy so the insurance covers the treatment if you go outside. But you neeed to find out first how many sessiions of pt your ins. will pay for. remember this does NOT include what ins paid for as part of the hospital stay.

Kenly NC
Wilson NC

Gaston Lake, NC
Minnosott Beach, NC

You know she didnt say! I know Im 3 points from needing insulin.

In my case they are sure it was from steroids. My levels always went higher with them, and the last time, it just stuck there:((

Amatrine

Well with this humid season we had this year, I was in alot of pain.

Turns out I have rheumotid arthritis. Top it off I was just diagnosed with diabetis.

I think I am running out of things to catch!!!

Sorry to hear you are in a chair. I know how hard that is. I hope you are doing better. I havnt been by the board in while, so sorry for the reply being so late. Better late than never!

I am actualy trying to find a job for the first time in 6 years. Using a Temp agency so they know I can not do a job where I have to stand…but if I dont get out of this house I will die, or my husband will,lol

Ama

I got mine after a bout with Mono and a flue shot at the same time.

But I used to work in a machine shop with chemicals that are now illegal.

One lady that did the same job as me died young of kindey cancer.

I really believe those chemicals set me up for the susaptability to the

autoimmune problems I have today.

Amatrine

Try monsoon season here in Phoenix!

The humidty with 116 degrees. I am just starting to have another relapse and new onset osteoarthritis in my hands. I have to go in for PE tommorow.I have a new wedding ring set I got for my 10th and I cant wear it:(

My last relapse was the same time last year so I think its humidty related.

I can not do extreme temps. In cold, like another poster, my body gets to cold. I have autonomic dysfunction as a result of GBS ans CIDP.

Strange is sometimes its 100 degrees and im freezing. I have fainitng issues as well with the autonomic dysfuntion. In the heat I fatigue out, and am hotter than normal. I have relapses. Just one day out driving in the heat and I have a hard time pushing on the brake pedal in my car.

Amatrine

I have been five years post GBS and I still feel this way from time to time…his legs/body will tell him when he needs to take it easy.