78 yr old mother diagnosed
AnonymousJune 8, 2007 at 12:20 pm
I am a new member here since my mom was just diagnosed a week ago. Does anyone have experience with GBS with an older person? After everything I’ve been reading, I feel pretty good about her recovery- I’m just concerned her age may play a factor. She’s had the immunoglobin, last dose on 6/3- the drs are concerned she’s still paralyzed. I think it’s too soon to jump into the plasmaspheresis, but I’m just an internet doctor! Does anyone have any thoughts or experiences they can share with me? My mom is in Buffalo NY and I’m in Portland OR (makes it really difficult to be so far away).
AnonymousJune 8, 2007 at 12:37 pm
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……
AnonymousJune 8, 2007 at 1:55 pm
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
AnonymousJune 8, 2007 at 10:31 pm
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
AnonymousJune 8, 2007 at 11:22 pm
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.
AnonymousJune 12, 2007 at 2:17 pm
Thank you all so much for the words of encouragement! You really have made me feel a lot better. She’s hopefully moving to the other hospital today (they’ve just been waiting on a bed), where they will do the PP. They have a good neurological department, which makes me feel good too. I guess she’s taking a lot more breaths on her own now, so I’m hoping she can get rid of the trach in the next couple weeks. Her legs are still paralyzed, but I guess she’s moving her arms pretty good now. It seems like she’s progressing as best as she can (it is a SLOW process), so I’m wondering if the PP is necessary. I’m sure it’ll work, but it seems like a big procedure on a 78 year old woman.
Since I’m new to this- what is OT and PT? It is Physical Therapy? I can’t guess at OT- help please.
Thank you so much!!!
AnonymousJune 14, 2007 at 11:19 pm
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.
AnonymousJune 15, 2007 at 11:23 pm
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?
AnonymousJune 16, 2007 at 6:10 pm
Peggy, That is so kind of you to offer! My whole entire family is there- brothers, sister, aunts, uncles, cousins, etc. I’m the only one away and so far away. I joined this group because I’m all by myself in Portland OR worried constantly about her and I have no one I can talk to out here.
I appreciate your offer, but the drive from Syracuse is about 3.5 hours- that’s too much.
I think she is getting good care- it’s just hard to know when I’m so far away.
AnonymousJune 16, 2007 at 9:01 pm
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
AnonymousJune 16, 2007 at 9:49 pm
That’s part of the reason why I’m resistant to putting my mom through the PP. She was diagnosed 2.5 weeks ago. It seems like we need to let the worst of the virus run its course and let the immunoglobin do its stuff, and then we could consider the PP if there’s no improvement. That’s my opinion, but then again if the PP stops any further myolin deterioration, then maybe it is good. You’re right- there just isn’t enough known and the doctors just seem to follow procedure rather than common sense.
I think a pp on a 78 year old would be incredibly taxing on the system.
I am so sorry to hear you’ve had it twice!!! How long were you in the hospital? Were you on a ventilator?
AnonymousJune 16, 2007 at 10:26 pm
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.
AnonymousJune 18, 2007 at 11:37 am
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.
AnonymousJune 19, 2007 at 2:17 am
Wednesday will be 3 weeks since her diagnosis. She has had 4 treatments of the plasmapheresis. They were supposed to do the 5th treatment today, but may not have since she started bleeding through the trach last week. The doctors explained it was due to the thinning of the blood. I guess she’s taking more breaths on her own, but still not enough to remove the trach. I hope that can go way in the next few weeks. I really miss just talking to her. We used to talk on the phone a couple times a week.
The good news is- the doctors and my dad have noticed she can move her toes!!! She hasn’t been able to move her legs or feet in 4 weeks!!! Maybe all these treatments are really working!
I know it is a slow, slow process and I’m trying to be patient. I expect she will probably be in a wheelchair for a while, but not permanently.
I’m trying to figure out good times to go back and visit without bankrupting myself!
Thanks for checking in and thank you so much for your thoughts and prayers!
AnonymousJune 22, 2007 at 12:30 am
My dad called tonight to give me the latest update. I guess they are having her sit up in a chair for a couple hours a day now. She is definitely moving her legs- not much, but they are moving! The first time in weeks!!! The shingles I guess are almost gone. She does have a fever again and fluid in her lungs, but I guess they have something to suck that out every day (?). It seems she is recovering- my whole family (who are with her) are getting very depressed. I’ve tried to get them all to check out this web site or do some research on their own, but their not. I seem to be the only one in touch with all of you, so I know the little accomplishments (moving her legs a little) are really big things.
It still breaks my heart that she has to struggle so much and that I just can’t be there with her.
Thank you all again for all the encouragement and thoughts and prayers!!!
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