Just diagnoised with Guillian Barre Syndrome

[nikki1843]

Anybody out there dealing with this? Id love to talk with someone that can give me some been there done that advice.

[A Simple Pine Box]

I'm sorry to hear about your illness. I have MS (diagnosed in 1989) and suffer the same type of symptoms. Are there support groups near you? Possibly your dr/clinic can help you find something.

[jean in virginia]

Bless your heart. My husband had the Miller-Fisher variety (instead of starting in the feet and ascending, it starts in the hands, and goes up the arm, neurologist we saw said he sees a MF case once every 5 years) a year ago, spent 9 days in the hospital, 8 days in in-patient rehab, missed 3 months of work, and still has residual problems with numbness, but thankfully no pain.

Be glad you got a diagnosis! That was a big part of his problem, because of the strange type of GB, it wasn't considered as a diagnosis until we ended up in the ER. He went from being normal/healthy to being unable to walk or feed himself in 2 weeks with constant pain.

In the hospital, they did not manage the pain well, lortab and 1 mg morphine in his iv if he had to have it, and they did immunoglobulin infusions for 5 days, which stopped the GB, then rehab. In rehab they put him on oral morphine, and life got a lot better.

Slowly his nerves healed, and manual dexterity came back, but he still has numb patches on his legs and I think most of his toes are numb.

Compared to being in a wheelchair unable to move, though....

One question EVERY doctor asked us was "did you get the flu shot" and the answer was no way on earth. I have a friend who is a nurse, and she will never get it because of seeing what my husband went through, even though it wasn't shot related.

Scary stuff, why do you get it, what is it, but the good thing is that it is extremely unlikely to get it again.

[CVORNurse]

Our elementary school secretary had GB 2 or 3 years ago. Local hospital couldn't figure out what was going on when she was hurting all over. When she started begging them to do something drastic they shipped her to the university hospital. She was in the hospital for a couple of weeks, then sent to rehab to relearn how to use her hands and to walk. When she arrived, they told her it would be at least a year before she walked on her own again. She proved them wrong and was back walking with the aid of a cane within 3 months. Today, to look at her, you cannot tell she ever went through this. No cane, and she even played in the old timers softball game we had 2 weeks ago.

Please keep up heart and faith. No matter what you are told, 9 times out of 10, they are just guessing on the prognosis. Especially for something like this.

[poppy]

It can run from mild to severe. I know a guy who had it and never missed work but he did have a lot of pain and his job did not require much physical activity. I also have a friend who was divorced at the time he had it and ended up in a nursing home for 4 months but is okay now.

[Loosecannon]

I sort of can relate. My middle sone in law (age 32) was put in CCU Thursday. It hit suddenly Wednesday and he was hospitalized Thursday.

[Pinky]

I'm sorry to hear about your illness. I have MS (diagnosed in 1989) and suffer the same type of symptoms. Are there support groups near you? Possibly your dr/clinic can help you find something.

My Father fought MS symptoms for years. He took B-12 shots,
his legs would buckle from underneath him sometimes, and he ended
up using a cane, but he didn't end up in a wheel chair. He was a
fighter and I think that was half of the battle. I am going back to the
neurologist, because the last MRI they did on my brain, back a few
years ago, there were dark spots, and when I read the report it kept
mentioning "demyelination"...........

A degenerative process that erodes away the myelin sheath that normally protects
nerve fibers. Demyelination exposes these fibers and appears to cause problems in
nerve impulse conduction
that may affect many physical systems. Demyelinization is seen in a number of diseases,
articularly multiple sclerosis.
Diagnosis is by functional observation and by testing for myelin protein in the blood.

Dad always wanted me to go be tested for MS, as he said that I
have quite a few of the same symptoms as he did.....he passed away,
and I had never gone for tests. The neurologist wants me to come
back for further testing. I seem to be the kid (out of four of us) who
has the same diseases/ailments as both of my parents, including
otosclerosis.

A Simple Pine Box, I'm sorry that you suffer from MS. What are you
taking/doing for it? It does affet different people in various ways, with
some becoming disabled quickly, while not affecting others as fast.

[packyderms_wife]

There's a thread about this and fibromyalgia over on the herbal list and the general consensus is to add magnesium rich foods to your diet, and have your doc test you to see if you have a magnesium deficency.

K-

[Pinky]

Anybody out there dealing with this? Id love to talk with someone that can give me some been there done that advice.

Nikki, I'm sorry to hear that you have Guillian Barre Syndrome.

Here's a link to some information about it, and some
ways to help with it. I hope you find something to help you
recover completely, and that God comforts you during this
trying time.
http://guillainbarre.net/cures-for-g...e-syndrome.php

http://www.livestrong.com/article/39...arre-syndrome/

http://www.gbs.org.uk/

http://www.mayoclinic.com/health/gui...ng-and-support

[Pinky]

There's a thread about this and fibromyalgia over on the herbal list and the general consensus is to add magnesium rich foods to your diet, and have your doc test you to see if you have a magnesium deficency.

K-

Wow, I have fibromyalgia and cfr, and never heard about this......thank
you, Packy. Not sure who you were addressing this to...maybe to
anyone who would benefit from it, but it's greatly appreciated. =)
Can you point me in the direction of the herbal list, here? TIA.