[FONT=”Microsoft Sans Serif”]thank you so much for your dear thoughts, encouragement and wishes!! i gain strength from them, from all of you– i really thank you.
yes, i will continue to post– i will always belong to this exclusive fellowship…
i hope that everyone here fights the good fight and lands up in a better place– whatever that may be. especially for the youngest victims of this horrid disease– and especially for those a bit older– how unfair, for all, but really for those already feeling the bruise of old-age.
it has to be a matter of time before either SCT will become more mainstream, or better– a prevention is found.
i’ll hope, as i am not a prayer….
yes i will look for the post you mentioned Kelly by Markens–thank you. A lot of great advice and helpful info. Im glad to know that I am not alone in knowing exactly when my ivig stops working—-but i do know i feel GREAT right after having it—i travel to MA for 2 days to get it and when i arrive back home on the evening of the second day i feel like superwoman–lol……wonder if its the ivig or the 2 day rest from work, kids etc…??? Guess i will keep a journal again now that my ivig schedule has been increased to every 6 weeks to see if i can determine when it works the best. Lori
thanks everyone i call every week to see if there is a cancellation none yet i can wait less then 2 weeks . my dr is the one who sceduled my appointment. now im going thru insomnia ive been off the prednisone 3 weeks now was sick the first 2 i have no energy at all i really need to get it back as well as normal sleeping habits that stuff really has my body all confused and messed up will be glad when its over . on the brighter side also im getting more feelings in the bottom of my feet and to be honest the muscles in my hands arent as sunk in but i still have no strength or coordination all i can do is hope. as it sits now all my dreams have come to a standstill. ive allways loved working on and riding motorcycles. now not being able to work on them without help and watching them sit in the garage because i cant ride anymore selling them 1 at a time just to keep my head above water . im not feeling sorry for myself just thinking a year ago i was normal now just watching people walk and use their hands really makes appriciate what most people take for granted. i really believe that the prednisone is what messed me up going from walking normally in november to being darn near incapaciated in 4 months. like i said before i was getting around well till the day i fell and it never got any better makes no sense Dave
im not giving up. i would like to but im not. Im hoping this new dr will be able to help he is the head of neuroligy at emory university here in atlanta ga. he is supposto be the best around he must be pretty good he is booked up 3 months in advance keeping my fingers crossed .my pharmacist told me to get a lawyer and go after the old dr i dont think that would help all i want is to get better. ive been off the prednisone 3 weeks now still dont feel good. ive tried working my legs out on the exercise bike it makes the back of my calf and knee hurt bad after wards i guess its from all the swelling. i have no balance i do not know why its been ever since i started falling any ideas? if i have my walker or something to hold on to im ok. im scared when taking a shower when i close my eyes standing im afraid im gonna fall.
i did file for ssi last week trying to get in touch with the right person to get my disability papers from work (government job) your right on the short term i just signed up for it last year took effect the 1st of the year the problem was the blood clot the end of last year. the cellulitus was diagnosed 3-2010 so im not sure what is going to happen hopefully good.
even tho im off the prednisone now im having a bad time sleeping like i said in the last post i cant sit or lay for a long time it doesnt help that when i lay on my back i cant breathe wich is either from the cidp or from the back problems they arent sure. but cant stay in the same spot long periods. the only way i can sleep good is if i take 2 lortab wich i dont like to but only take 2 a day usually. thanks for all the input gives me more confidence Dave
as always i appreciate your good wishes, thoughts and concern…
and ms. judy, it doesn’t matter when you join– our common thread trumps seniority 😉
sophie is preparing a new entry with our latest updates… her brain can process the data better than mine during this time, as you can well imagine. plus she is tirelessly and inexpressibly good to me…:rolleyes:
more soon– hope you are all doing well.
Thanks for the positive support.
I questioned the dosing yesterday. I am 190 lbs so the load is 35 gm per day for 5 days. and the total for the next two treatment cycles is 172 gm’s. So it is basically 3 loads in a row. That ought to fix my Wagon EH! IF not, UH OH!
I plan on being hands locked head back with eyes to the Sky, the whole time.
Happy Newyears to you all. Be Safe!
I thank you all for your replies and your support. I am away from home still at a conference and so cannot really rest much–it is just Go, GO, GO all day from 7 am to 7 pm and it is beating me down big time.
To answer what questions I can. I have not have any recent infection, but do have stress not that that is that different, but it is really hard to travel or prepare for traveling–overdoing before so that there is less catch-up after return, the work does not go away.
I am going to rest a lot after return home horizontal as suggested and see if things get a good deal better, then if not, contact my doctor about whether or not to additional tests. The testing results do not seem to reflect what is going on in me that well–I do not know if it the nerves tested, or I am just strange, or whatever.
Dawn, you are always kind to all and gentle, so do not worry. I am excited to meet you and the others coming to the symposium. It is not long away.
Jeff, thank you. I hope that this is just tiredness unmasking previous damage that is there as you say and not progression. Thanks for reminding me that there is an iceberg and we only see/feel a little or it, but that does not mean there is not more already there. I think maybe subconsciously that is what worries me, though, because this is new/worse than before and I have done a lot before–pushing as hard as I can to do my work at times when there are new big concerns with someone.
Joanf, I hope that Bill feels better and that you are doing better with the worry of finding out what this is and how it affects life. I said elsewhere recently that I am not sure what is hardest about this crud. I hate that I can do so little, but I think I hate more that there are no reserves to use in times when life asks of you to do more temporarily.
Thank you all for replies and support again. I am honored to have found this place and people that care so for each other.
WithHope for continued life despite these illnesses.
I cannot thank all of you enough. Just for my own info what is the name of the neuro in Michigan. I will look at all our options and see what happens in the next 2 weeks and then go from there. Just trying hard to not show emotions to Bill right now
It is so hard as all of you know with your own problems I will tell you more some other time as not everything here is everything but hate to bring up more that you need to hear only what is necessary for us.
Caring and understanding more everyday
It saddens me to see just how many people have to be told they are crazy before they get to the root of their pain. Fortunately, I’m feeling much stronger and better equipped to walk in there today and make sure I’m treated the right way. Limekat, I am taking my boyfriend with me, and he already knows he’s allowed to interfere if I’m getting pushed around 🙂
I just found it so damn funny that all of these symptoms started during one of the least stressful times in my life — school was very manageable, and that can really be what gets to me and stresses me out most of the time. My life in general hasn’t exactly been “stress-free”, but I have never even had so much as a stress headache prior to the accumulation of all these symptoms!! So how my body suddenly took on this ability to convert all of the stresses of daily life into physical pain is a little bit beyond me.
Thanks to everyone who shared your experiences — most likely, I’ll be in my EMG today holding on to those thoughts and staying optimistic because of them. I’ll be sure to let everyone know how it goes 🙂
Thanks Everyone !
I will try to be more open and try to talk more with you Guys.
since this occurred, I don’t socialize that much like I used to. I just have
a few friends that call me once in great while. I notice as time goes by hanging with friends becomes less and less. I don’t know if any of you this has happen. Well this is what is happening to me and I think talking with you I will feel much better and I thank you.
sonny GBS/survivor 2004 🙂
🙂 Thank You ALL !! I go to the doctor on Tuesday…. we will see what he says. I feel better coming here but feel bad that it has to be for something like this to unite people. Finding anyone that has even heard of GBS is rare but I thought atleast SOME doctors would of heard “something” about it.
again THANK YOU ALL !!!
“Share A Smile” 😉
[FONT=Book Antiqua][SIZE=3]I went to visit my daughter & the grandkids today it helped, I just needed to get away from the house for awhile. It’s just very lonely here I think seeing those grandbabies, helped quite a bit. Of course one thing I don’t need is my mom to keep on to me about going to church. That happens every sunday, or one of the people at that church coming out & telling me you need to be in church. [/SIZE][/FONT]
[FONT=Book Antiqua][SIZE=3] That church I don’t need to be in, that minister left a bad impression on me the day of Debbie’s funeral. Everyone at that church thinks he is so good, Well I don’t. I just don’t care much for him at all. Well I need to get off that subject. But I’m better tonight than I was last night.[/SIZE][/FONT]
Thanks Gene for the info on te meds and drs!:D
I think for the first time in a year I actually slept for 4/5 hours straight!!!!!!!
I am going to PTand OT 3x a week.
Does anyone know if there are any services available for GBSers? My wife is doing everything and I don’t know if there are organizations that can help her. She tries her best, but I know it’s hard. She is the only one working now, she cooks, cleans, shops, works, taxis me around to all my appontments, etc. When I look online for disability/handicap services all I find is SS. Financial assistance would be great since we have only one salary now and an increase in medical bills, but also I am looking for social acivities for the handicapped, house visits, transportation, etc. It would be nice to leave the house and change air a bit too.:)
I am glad to see the support here, especially the private messages I have gotten. Thanks so much. Today is a lot like yesterday and I am still dragging my right leg. But I put a call in to the doctor to keep him updated and see if he wanted to do anything about it. A flareup like this only 3 weeks after IVIG was completed has my wife quite upset. She is a cancer survivor x5, so she hopes I don’t end up with chemo.
Hello Emily. Thanks for the posting and it is nice to hear from someone else from Missouri. Granted I lived in the bootheel 3 hours south of St. Louis, but it makes my world seem a little smaller to see a Missouri locale on the site.
Bye for now everyone. I am going to get some rest and check back in with you all later.
Nate told me that him and his younger brother Ben are going to their friends house saturday, then stay at a Motel 6 that night. It’s 100 miles away.
The next day they are going to their friends house again to watch WrestleMania. LOL
Their friends house has 3 very short long steps next to the driveway to get in the front door so it will work for Nate’s chair.
Nate made the reservation for Motel 6 and specified that he get a downstairs room since no handicapped rooms were available yet. They’re being remodeled.
His Bro will take good care of him, I know that. He is very hands on if he needs to be with Nate. He has always been the type that just jumps in there and does what needs to be done so I’m not worried about that part.
I know I will be a little worried but I think everything will be ok.
I am going to take the advice about going out once or even twice a week with my hubby and spending some quality time together.
He is very good about making sure Nate has everything he needs and all of us really appreciate that.
I’ve been talking to nate lately about him try new things to see if he can do them. Now that he found out he can get out of a low car and stand, I think he is ready. He agrees. We’ll see how it goes.
We went to the fishing show today without Nate. He told us to go and he would be ok, so we did.
I called him a couple of times and he was just fine. He can’t be up sitting that long anyway.
He keeps his cell phone right next to him always. He had our neighbors on both sides phone numbers as well as some others in case he needed them.
He fed the dogs, took them out to go potty, made himself a microwave tv dinner, watched tv, did some computer stuff and I think he had fun without us there. He says he was bored though but thats not uncommon.
I feel better having gone and he probably does too. Its just hard for me not to worry about him.
I really appreciate all the kind words and advice. It really helps a lot, especially from those who have been where I am.
I know its going to be hard going thru all the stages we have ahead of us but we will have to go thru them to get nate’s life and our own back, whatever that turns out to be.
I really appreciate this board and all the help I have gotten.
First of all to answer the question of where we live, we live in Illinois about 37 miles from Rockford or 90 miles from Chicago. This is the second time the Dr. has taken my husband off of IViG, and no he hasn’t had any kidney problems or other problems like that, the Doc just told him that IVig is very hard on the kidneys so they give the patients a break from it and then 3 or 4 months later will start it back up again. I told my husband what was suggested by you all and he was very surprised so hopefully he is thinking about going to a different Neuro now!! I am so thankful for a site like this to go to where people know exactly what you are talking about. Thanks again and our prayers are with you all.