Hi Jan,

Sorry to hear about your father, but welcome to the board and to our family. First off, many things can affect the memory, it’s probably due to a combination of the meds and the stress of the situation. I had very severe memory issues post-CIDP and they eventually got better as I got better. Have they indicated if he will be receiving IVIG infusions also?? or has he already had them?? Any additional information on his medication and any infusions he may of had would help. Take care and you both are in my prayers.

Jerimy

Most posts here are American/North American but we have several members from the UK and Ireland. Perhaps the order of treatments is different in the UK and the US, however the treatments given are always the same IVIG, Plasmapheresis and Steroids. I was given IVIG first, then they added steroids(I had hemolytic anemia and required prednisone) and I never had plasmapheresis.

You might also want to check out the UK board [COLOR=blue]gbs.org.uk [/COLOR](cut and paste into a browser)

Jerimy

hi janp, welcome to the family. don’t feel out on a limb. there is also a gbs site in uk, you can go there via the front page of this site. alot of us go back and forth between the 2 sites. treatment is almost the same no matter where you live. give my best to your dad. take care.

Hi Jan,

Glad you found this site, but sorry you need to.

Besides continuing to encourage your father and telling him, that even though progress will be slow, he will improve, you can be be his advocate throughout his contact with the medical community .

Another very important way that you can help him is to educate yourself, your family, and his medical team about CIDP. The medical community is not well informed about it, mainly because it is rare, but you can get a lot information on this site and on the UK site. Print out articles and pass the information along to his doctors. nurses, PT people, friends and family.

Having others understand what he is going through and will continue to deal with is going to important to him. The frustation of having to constantly explain or try to get others to believe what he’s going through can be a major stress factor for your father.

YOu may want to encourage him to post on our forums (or at least read posts by others), so he will know he’s not alone. Our members are a great source of support and information. Please come back whenever you need to.

Best wishes,

Suzanne

Hello Jan,
Welcome to your new family, where we feel what you feel. These syndromes can happen at any age, young or old. I am younger then your father, but still a senior citizen. My feet are also numb, for me a big part of CIDP. You can learn to live with it. We are dealing with a chronic illness, so being scared and frustrated and stressed, can cause memory problems. IVIG’s are a very common treatment for CIDP and they are used to control progression to give us time to try to heal. Do talk to your father’s doctor to find out whether this needs to be tried.

Jan,

Good move on stopping the flu shot for your father. Your logical approach was obviously effective. Written information by medical professionals are often a very good reinforcement.

When you calmly ask reasonable questions (and insist on answers), the medical professionals who are worth dealing with will respond. The ones who don’t are not people you should continue to deal with – move on to another and don’t waste your (and your father’s valuable time). You need allies in this battle, not egos.

Best wishes and please let us know how things are going.

Suzanne

[QUOTE=JSeattle]My father is in the hospital right now — he just started his IVIg hours ago. He can’t walk, his left eye is drooping, he has double vision and trouble holding things. They did a spinal tap last night & found elevated protein levels. They ruled out stroke, tumors, the ususal. They think that it is GBS Miller Variant but have not confirmed it with us. He is 67, very healthy & did not have any viral infection prior to the sudden onset.

I had a few questions — this is so new to me. What’s the Miller Fisher Variant? How is it different than GBS?

My mother will not leave his side – I have a feeling we are in for a long ‘getting worse’ period. Any advice you can give to a concerned family member?

They want to move him to a therapy floor to start 3 hours of PT a day – not sure if insurance will cover it. He has been tested by the respitory docs, so far so good, but should we be worried that he will need a ventilator?

Anyway, I’m just so worried…and appreciate any advice.[/QUOTE]

My understanding is that GBS starts at the bottom up (feet) and Miller Fisher starts at the top (head lst) I also think it attackes different nerve systems – I had my cranal never attacked. I was diagnose with MF 3/06 due to double vision, losing my balance, tingling & numbness in my hands arms and some of my feet mainly on the left side (my proetin count was 93 from my spinal tap). 3/4 of my face was numb including my teeth and tongue – could not swallow and had to have a feeding tube – I had the IVG and stayed in ICU for 7 days then went to Rehab – my insurance did pay for it – I had Atena. I feel that Rehab pushed me just a little to hard (I feel from talking to other PT’s because MF & GBS are so uncommon they treat you like a stroke vicitim which is totally wrong) and because of a hospital I never received enough sleep. As soon as I got home I started recovering much quicker – I am still very tired all the time and still have face & mouth problems and eating.

hi & welcome,

sally is right. the mf varient of gbs means the cranial nerves are involved. it is good he has started ivig. it should stop further decline [it works on 70% of folks]. it does not cure. passive pt is good. regular pt must be limited so as he does not become too tired. pt helps the muscles, but is not good for the nerves which needs rest. it becomes a fence walk. make sure the pt dept. is aware of this. let him have as much rest/sleep as he wants. it is the fastest road to recovery. take care. be well.

gene gbs 8-99
in numbers there is strength

Hi JSeattle, and welcome.
I was Dx’d with MF varient of GBS November of 2004. Everything is good now. I’ll be in Seattle Monday afternoon and will have a free evening. If you think it would do your father any good, I’d be more than happy to visit with him. Just email me with the specifics, and I’ll be there.

[email]vmac3205@comcast.net[/email]

Okay, no response. I have to leave for Seatac in a few minutes. I’ll be free this evening. If you want me to visit your father, email my husband at [email]alexander_mackenzie2000@yahoo.com[/email], and he will give you my cell number. You can call me and we can arrange something.

Vmac

JSeattle The onset of GBS can be extremely frightening. I was diagnosed with Miller Fisher Syndrome in 2002 and can tell you I was afraid. I am 62 years old and live in Seattle. If I can help in any way please let me know.

[QUOTE=Jim Yarno]JSeattle The onset of GBS can be extremely frightening. I was diagnosed with Miller Fisher Syndrome in 2002 and can tell you I was afraid. I am 62 years old and live in Seattle. If I can help in any way please let me know.[/QUOTE]

Jim – since there are not that many Miller Fisher patients – how are you doing now – from my reading the info. they say 97% of the people recover 100% within 6 months – I am now going on 8 months and feel the same I did at the end of 4 months – mainly fatique and numb face, mouth, teeth and tongue with a burning sensation. I am 59 yrs and have no idea how I got it.
Sore upper arms and back at night when I get tired.
Thanks,
Sally

Hi Jim,
I’m 58 and was dx’d with MF varient Nov of 2004. How are you doing? I’ll be back in Seattle Nov 2. Take care.

JSeattle —

I’m joining this discussion a little late, and by now your father is about two weeks into the adventure. So I assume you and your parents are feeling a bit less unsure about the whole thing.

Seems like there are a lot of us in our 50s and 60s who got hammered when this Miller Fisher thing came out of the blue. The decline is so sudden, so pervasive and so severe that we probably all thought we were dying, and the ER guys couldn’t say that we weren’t. Then the neuros showed up and assured us that we were going to be okay. And for the most part, we are.

But you need to know (and I’m sure the neuros have told you this by now) that the path back is a long one. Although your father will probably improve swiftly from his low point, there will be a time well before complete recovery when progress will slow down or stall completely for awhile. That will be extremely frustrating, but he can’t let it discourage him. Time, rest and positive attitude are the only cures. Most of us get most of the way back. And those of us who don’t get all the way back figure ways to use what we have in order to live nearly normal lives.

Stay positive and make sure sure mom and dad do too.

Sally
I was dx 3/06 too GBS/Miller Fisher. I thought I was having a stroke when I went to the first emergency department because my left side was the most affected. I still have some double vision in my periphery vision, tingling arm/hands mostly left side, tingling feet and strange sharp pains from time to time. I notice my left eyelid droops more when I’m tired and I too get the neck and shoulder pain/fatigue. My face feels funny on the left side. General all over fatigue will hit out of the blue. I feel like my limbs “fall asleep” more so that ever before. So I guess there still is something going on and the healing is SLLLLLOOOOOOWWWWWWWWWW.
Michelle

[QUOTE=Sally Sobieralski]Jim – since there are not that many Miller Fisher patients – how are you doing now – from my reading the info. they say 97% of the people recover 100% within 6 months – I am now going on 8 months and feel the same I did at the end of 4 months – mainly fatique and numb face, mouth, teeth and tongue with a burning sensation. I am 59 yrs and have no idea how I got it.
Sore upper arms and back at night when I get tired.
Thanks,
Sally[/QUOTE]

Sally,

I was initally diagnosed in July 2002. I would like to know who “THEY” are. I am in no means coming down on you, I just know that no one GBS patient is the same. My unknowledgable Neuro told me the same “6 months” and he also said that I would be better without treatment. Well was he wrong!!! (A real idiot!) I got worse without treatment and now am suffering with residuals/unsure if I am getting it again.

Every time I go on on this subject, I want to make him suffer as I do because he had the empathy of a rock.

I hate this ride I have been given, but if Doctors and Neuros would be a little more educated in this maybe it would be a little more tolerable for all of us.
I am just venting and not mad at anyone here, I only have prayers to offer all who suffer with this like I do.

Thanks,
Schel

[QUOTE=schel]Sally,

I was initally diagnosed in July 2002. I would like to know who “THEY” are. I am in no means coming down on you, I just know that no one GBS patient is the same. My unknowledgable Neuro told me the same “6 months” and he also said that I would be better without treatment. Well was he wrong!!! (A real idiot!) I got worse without treatment and now am suffering with residuals/unsure if I am getting it again.

Every time I go on on this subject, I want to make him suffer as I do because he had the empathy of a rock.

I hate this ride I have been given, but if Doctors and Neuros would be a little more educated in this maybe it would be a little more tolerable for all of us.
I am just venting and not mad at anyone here, I only have prayers to offer all who suffer with this like I do.

Thanks,
Schel[/QUOTE]
Schel – did you have MF or GBS or Both – I really feel after 8 months I am getting worse – but hate to be a complainer –
Thanks,
Sally

[QUOTE=Sally Sobieralski]Schel – did you have MF or GBS or Both – I really feel after 8 months I am getting worse – but hate to be a complainer –
Thanks,
Sally[/QUOTE]

Sally,
YOU ARE NOT A COMPLAINER!!!

I had GBS “with” MFV. My face was totally paralized, some swallowing difficulties, slurred speech, sensitive vision to light and occ. double vision, Extreme pain on a scale of 1-10 mine being a 12 behind my ears, inside my ears, the sides of my head, and low back of my head.
I also had numbness all over my body, I felt as if I was in fake skin, because I could not feel it, my feet, legs, arms and hands were numb and tingling along with extreme low back pain a #12 also because my bowels were also affected. Nothing they gave me in the hospital helped for the pain unless it knocked me out and I was sleeping. I could not walk more than a couple feet without sitting or leaning and could not even go up or down steps with out help on discharge at the hospital. I unlike others was never ventilized. My “QUACK” of a doc never started treatment. I did get out of breath with the simplest of tasks though. My treatment was put off because the “Willy Wonka” I saw said “I think you will improve on your own!” I call him Willy Wonka because thats what he looks like and he has the commen sence of a rock.

Please no offence to Willy Wonka!!! lol

Sometimes I wish I was a Neuro, because I would be different and actually LISTEN to my patient and not just base everything on “WHAT A BOOK SAYS.”

I also am sorry if I sound bitter. I probably am.

Did they treat you? If so did they treat you right away? Or did they wait?
If you feel you are getting worse get in to see your Neuro and DEMAND to be treated or restarted on some treatment. You need to be aggressive with them, they are not there to see how you are all the time; only do a 10-15 minute exam and base it on that. They are not there to see how you are the rest of the time so paint a good picture for them.

Well I am going to hit the hay, very tired.
Take care and stay well.
Prayers now to you!
Schel

Sally and vmac. Sorry about not answering but my computer crashed and than I couldn’t log into the forums. My recovery has been pretty good but I still have some residule issues along with the pain. My MF started with double vision and loss of balance. Next was my hands along with ataxia. About the doctors. I have nothing but praise for my docs. The ER doc was an intern. He called in help early. My neuroligest not only diagnosed GBS MF but also correctly perdicted my extent of recovery. The ER Doc followed my progress and visited me on a regular basis until I was transfered to another hospital 7weeks later.

Thanks for asking, Jim

Hi Jim,
How are things now. Some weather we’re having, eh? Breaking all records for November. I had an enjoyable evening in Madison Park several weeks ago. Lord, Bings makes a good martini. We’re getting some sun this afternoon, miracle of miracles. Are you home now?

VMac, Thanks for asking. I guess I am getting better slowly. We are getting alot of snow just now and it is cold. I have to say that I do much better in the warm weather. I seem to get stiff easily and this weather really brings it on. It was nice down in Phoenix for the Symposium. I think I will go back soon. The weather map indicated that you guys will get eight to ten inches of snow in the next day or so. That will test your snow tires.

Jim

Hey Jim,
We watched the Seahawks play in a good snow storm. And they beat The Pack. Go Hawks. The coldest I have ever been for years was watching from the Hawks Nest in Safeco Field. It was below freezing and those mettle bleachers. Man oh man, was it cold. Fun, though!!!
What part of Seattle do you live in? I have a good friend in Madsion Park and cousins in Normandy Park, but they are old and about ready to sell and move downtown. I come up for meeting in Burien on occassion.

So far we just have a skiff, and the streets are slick. Hope we don’t get a big snow, but we’re ready if we do.

Sally and vmac

Sally I am told that a person can expect to see improvements for about two years after the recovery process starts. I am continuing to see improvments four years out, but small. For some of us the pain never goes away but life goes on. I had terrable neck and upper back pain in the hospital that returns periodically, but not often. I wish you well.

vmac

Wasn’t that a great game? Was it Hemmingway that said something about the coldest winter he ever had was the summer in SanFrancisco? I don’t think he was ever in the new Seahawks stadium. And no, I watched the game from my couch in front of the fire. I live in Federal Way, south of Normandy Park. I don’t get into Seattle much any more but have spent alot to time in Madison Park in the past. Look me up if you have time when you are in town.

Jim

JSeattle

Well it’s going on a month for your father, how is he doing? I think that this desease can be harder on the family than on the patient. Try and give your mom a break if you can. Maybe the laundry or someting.

your friend, Jim

Hey Jim, watching the Hawks play in Denver right now. It’s not a pretty sight so far.
I won’tbe up until spring, now.
We had a St. Andrews party this weekend. Friends were down from Everett. A good time was had by all.

vmac

I am sorry to say that I don’t follow the hawks that closely. Don’t even know if they won. Pretty pathetic huh. What do you mean St. Andrews? The golfcourse? What did I miss now?

Jim

[B][/B] sally you can read my story @ [url]www.aboutgbs.com[/url] story #2 I was knowed as survivor48! I think my story which is full of information can help you ! my brother kept an almost daily diary of my illness!

best wishes

and make sure his blankets or sheets !are nopt too heavy for him!

thanks
scott j sieleman
survivor48

I sit here not being able to sleep and reading all of your threads, and it has really helped me a lot. On the other thread, I stated that I had really been depressed. Not anymore, all of your stories and really enlighten me and help me to understand GBS/MFV

Thanks,
Joyce
“I can do all things through Christ who strengthen me.”

Life goes on. We choose how we go through it. Its better to enjoy it, isn’t it.

Jim