78 yr old mother diagnosed

Im 73 Male, GBS nov 8 06, Had a great recovery, Trach, 40 days in hospital, wheelchair, walker, cane. I now can walk short distances without help, still have residuals, neurontin for pain vicodin when needed. The Nero doctors cant beleive my rapid recovery, the people on this site have been a great help to me and my wife, all in all I feel great, glad to be alive. Ill be rooting for your mom. Keep the faith…….Gene……

Jenn,

So sorry to hear about your mother. It does sound like she’s being given appropriate treatment.

Make sure she gets plenty of pain medication when she needs it. That was the most distressing problem for me during my active phase of GBS. The pain was unbelievable. Relieving it made the other problems so much more bearable.

Is your mother able to communicate? Is there a family member of friend near by who is able to act as her advocate while she’s in the hospital?

Please let us know how she’s doing, and feel free to come here for support or advice.

Best wishes, Suzanne

hi jenn & welcome,

as long as she is not degrading then the docs should not go to plasma cuz it washes out the ivig & it may be working. recovery happens later. the half life of ivig is 3 1/2 weeks. they should wait that time as a minimum. how old is she? take care. be well.

gene gbs 8-99
in numbers there is strength

JennIvy I had the IVIG the first week and the Doctors did not think that it was working for me and I was getting worse so they transferred me to another hospital where they could do the PP. They were not concerned with the PP wiping out the IVIG. Then I was still paralized for another two weeks before the illness started to reverse so I could move a tiny bit. They are sure right about GBS also means [B]G[/B]etting [B]B[/B]etter [B]S[/B]lowly. Be patient and be her long distance advocate. She will need lots of rest. They will slowly get her to start moving fingers and toes and hands and feet and then arms and legs. It comes back slowly. I have a new friend that is doing very well with her recover and she is also older like your Mom. Make sure she gets OT and PT in Rehab that is important. I was in the hospital for 9 weeks and that was considered to be a quick time. I come home to home nurses and OT and PT until I could attend rehab in a facility near my home. It has been awhile and I am still slowly working on getting my strenght back. Keep her thinking possitive and tell her we are thinking about her! Nice booklet available from gbsfi for care givers that you can read and know what questions to ask.

jenn,

oh, i see she is 78 [i should read the thread heading – lol]. her age doesn’t help, but give it time. as kit says, you Get Better Slowly. take care. be well.

gene gbs 8-99
in numbers there is strength

jenn,

ot is occupational therapy. if she is no longer degrading &, in fact, slowly recovering, then pp seems unnecessary. do they have proof of need? take care. be well.

gene gbs 8-99
in numbers there is strength

Hi, Jenn, I’m a 81 woman, dx 2 yrs ago, couldn’t lift my legs for wks. PT and OT helped a lot. Still can’t walk, but can swim and do aquaaerobics 3x wk, Believe not able to walk is because of scoliosis. Have been able to fly to Cancun for vacation 3 times. Your mom will improve, takes time and perseverance. God bless.

Peggy

Peggy you are an inspiration to us all! Keep up the good work. I felt so good that first time I could go in the rehab pool. That freedom was wonderful!

I live in Hyde Park, NY and hope to visit our son and his family in Syracuse for thr 4th. If at all possible would try to visit your Mom in Buffalo. Have to check with my son to find out if he can drive me. Does your mother have a relative close by her to be her advocate?

I am confused. It seems the doctors have varying opinions on what works and what doesn’t. I thought that GBS takes a certain amount of time until it peaks, and then it turns around slowly. If it takes three and a half weeks for the IVIG to work, how do we know that it was the IVIGA and not time. The IVIG does not work for some people. Others are getting it for years. Looking at this logically, something is not right here. I truly want to understand GBS since I had it twice. Neither time did I get the IVIG or PP. But I know that the supplements have kept the pain away, because when I stopped for a day, it came on like block busters. Anyone else seeing this inconsistencies in all of the posts. Not that we are wrong, but that they have No idea what is working and what isn’t. Scary

Jenn,
I was not in the hospital. I went on 10/9/06 and the ER doctor said I was just in the beginning stages and they wouldn’t give IVIG until I was worse. I couldn’t walk and swallowing was difficult. I would not consider this the beginning stages. I decided that they did not know what they were talking about since this was my Second time! The next day I collapsed on my ankle and wound up in an ER closer to home with a fractured ankle. The doctor knew I could not walk or use my arms and lived alone and still sent me home after I begged him to keep me. I was not on a vent because when breathing got difficult I took MSM – a supplement that helps breathing. Swallowing was difficult so I learned to chew everything 50 times and the bubbles in soda helped the food go down. I took lots of vitamin C which supports the white blood cells which fight viruses. I took lots of B complex which supports the nervous system. So I systematically solved the individual problems that arise with GBS. As for the inability to walk and use my arms, I lived on the floor and crawled around for over three months. But I looked on the bright side in that I was not exposed to the germs in hospitals. Also, I am sure they would have confiscated my supplements which were helping me immensely. I know in my heart that I would have gotten much worse. I am amazed that more people don’t try to build up their bodies this way and let the body heal itself. I think GBS might be a virus. I do not have a lot of faith in what the doctors know about this condition. They even call it a syndrome which means they cannot prove what causes it. Looking back, I am glad I did not get the IVIG or the PP. It lowers your immune system. I built up my immune system with the C. The way to know if you are taking too much vitamin C is bowel intolerance. (Your waste products will leave your body.) I was taking huge amounts and did not get this which tells me my body was using every bit of it.
The fact that I have bypassed the pain and nerve damage tells me that I did something right.

Jenn,

The purpose of the IvIg is to stop the damage to the patient’s nerves, not to cure GBS. [B]The longer the attack is allowed to continue unabated, the more damage is being done to the myelin and to the nerves.[/B]

This is why the experts on GBS recommend the treatment be started as soon as possible. Neurologists and many other doctors and researchers have been studying this disease for years and have finally found something that helps.

The reason not to wait is, that after GBS has run it’s course, the IvIG or PP does no good. The damage has been done by then.

[B]Delaying treatment can increase the length of recovery time, and in some instances, means that the damage is too severe for the body to repair, and can result in long term crippling injury or pain.[/B]

With consultation with her doctors, vitamins and supplements may also be of some help to some people, but IvIG is the standard of care for GBS.

The reason some people get IvIg for years, is because they have a chronic form of GBS called CIDP. Normally, GBS is a one time event, although there are occasional cases (like Carolyn) where someone gets this disease again.

There are several variants of GBS as well. You can read more about the differences on the GBSFI website- see article “What’s in a Name”.

Hope this is helpful.

Suzanne

Jenn,

Catching up on reading your posts… I hope your mother is doing better today. I can only imagine the frustration of not being there. Hang in there and keep us posted.

HUGS to you 🙂