thank you all very much for yr posts. last night and today came and went by without any new. I will definately check out on my thyroid although it was checked a year ago. I think I will just ignore (as much as possible) things happening. One tends to get a bit fuzzy when a lot of unexpected and rare things fall on ones shoulder altogether (I’ve got 3 auto-immune diseases now and a whole batch of medication with regular visits to physicians to get things under control). Getting a bit fed up with things (never used to visit any doctors, my mother used to say ‘what comes alone, goes alone’ as well as ‘just go around yr business, if you forget it it will forget you’ and so on and so on). I want to go back to my work and go on with my ‘active’ live. Will let you know if that works.

Thanks everybody for your advice. However, I was in hospital again last week for IVIV and testing and although clinically I made great progress (they told me due to attitude and a lot of exercise), the testing did not come out too well. They started my on cortizone again complementary to the IVIV. They also gave me Neurontin for the tingling and spasms in legs and arms. So, for the time being it seems I will be happy and fuzzy. Cortizone always gives me a real energy-kick while (as far as a read the prescription) the Neurontin is a medicine that makes you feel reaaaaal gooood (can’t wait, lol).

I went into the internet and read about the orencia. it seems it also suitable for crohn’s (although not part of Crohn’s protocol. I will pick it up with the various doctors involved an see what they say and if it is available in Greece.

Thank you all again.

I’d like to think of this site as a place of civil communications and exchanges of good and solid ideas. At times, it has not been like that lately.
I’m not uncaring about anyone’s situation, matter of fact? I COUNT MY BLESSINGS each and every day I am able to get out of bed and walk!
I cry for those who find they cannot, as I’ve been there!
I have always tried to put my ‘ego’ aside here, and never imposed any ‘opinions’ onto others, merely a suggestion or two at any time.

I’m also scared to the point I MUST respect this ‘condition/disease/whatever’! Why, Because I know of someone who has it, as a complication from a series of misdiagnoses for other usually, easily curable events. That person, has lost mobility, stability, motility, abilility to eat anything, and has been losing sight and hearing.
I not only respect CIDP, but like most, as we should be? I am TERRIFIED of IT. As I get up each morning, I sigh in gratitude that I CAN get up! And have not gotten to the point yet, where I cannot! Again!!
Each of our situations is different, from start to finish, as a rule. BUT? The ONE thing I’ve found is that there are NOT enuf docs aware that what’s happened to US CAN HAPPEN! And does! OFTEN! We’ve got to work on our doc’s awarenesses, and fast!
I’ll bet if someone could get into the ‘HHS’ Statistical data banks [they keep track of this stuff? Truly] That there are far more undiagnosed CIDP/GB S’ers’ out there than you can imagine.. Likely five for each ‘reported/diagnosed’. Think about that. Think about what you can do… Bless all of you!

Thanks to all for your prayers and well-wishes. To be honest, I’m not sure how I feel about my appointment yesterday.
I have to say that I DID get some of what I wanted…a doctor who seemed to listen (pretty well), and who did a couple of EMG’s herself right then.
But, based on her interpretation of everything to date, I don’t meet the criteria for CIDP. She said that while my velocities, f-waves, and reflexes are “weak”, they are there and within normal limits. She said that she would expect someone of my size to have stronger or “beefier” responses, but they ARE within normal limits. It took her a lot of time to get reflex responses, and she had to shock me as many as 20 times to get the readings she was looking for.
She ordered additional bloodwork to test for Sjogren’s and to see if I have protein in my blood.
Suggested I see another neuro, who specializes in skin punches and “small fiber neuropathy”.
In the end, she felt that I have a peripheral neuropathy of the common type, which, according to her, cannot be attributed in 80% of cases.
So, I don’t know. Guess I wait for it to either get worse, or just learn to “live with it”.

Elmo

Thank you very much for your responses; I truly appreciate them, and will consider all your suggestions.

As I said before, my goal at this point isn’t a cure, but, simply, a diagnosis. So much seems to hinge on that. Especially as far as work is concerned; my employer seems to be getting a little less tolerant with each missed day. I feel I’ve been pretty considerate so far, having only missed 1-2 days per month since this all started, even though there were a LOT more days when I feel it would have been better to stay home and rest. I’ve even considered looking for a less stressful job, but told my wife that I would feel guilty even applying somewhere, without knowing what lay ahead.

I’ll keep you informed as to my progress, or lack thereof.

Thanks again,

Elmo

Thanks again for all the feedback.

Elmo

Thank you all.

zbrd (or anybody),
I was just about to ask a question that you touched on. I try to stay as active as I can, but I’m starting to wonder if it does more harm than good. On days that you do feel weak, do you take a break from exercise? I’m having one of those days. My legs just feel tired. I know that I could ride an exercise bike, but I don’t know if that does more harm than good in the long run. Any thoughts?

Thank you, everyone for your kind words of encouragement and advice!

I’m truly touched by those of you who read my post and had enough concern in your heart to respond with your wonderful, helpful suggestions!

Based on what I’ve found out thus far, it looks like my best option might be to contact my state’s insurance program, NCSHIIP. My plan is to initiate my first contact with that agency after I return home from my next Solumederol infusion tomorrow morning.

If I learn anything from those folks that can benefit others in this group who are suffering under similar circumstances, I’ll certainly post the information ASAP!

God bless each of you, and remember to keep paying it forward!

Kevin (a.k.a. KHS730)

Thank you everyone for the responses. It is greatly appreciated. Today I am slightly numbish behind that eye. I have had that sensation before.

Curious about the pupil responses. MONTHS ago my GP was checking my responses with the pen light and I remember him spending a long time checking and rechecking that right eye. He never commented on it but I thought it strange at the time. Still do.

Thanks for all the feed back and the info.

(hugs to all)

Kelly

Thanks all it has been a lot lately to deal with and I am just hoping to get through the next couple of weeks to get my son through his hopefully last surgery (number 54) if the dr can do it the day after he sees him. I know this would be the last chest wall surgery and we hope that they do not have to go back again. The stress of his having the surgery takes a toll on him and me.
My husband has been wonderful through all this and sometimes has to kick me in the behind to get me to remember we are in this all together. His favorite thing to ask me is “Did you make yourself sick?” Ah NO who would ask for this! I am so grateful to have him and his family in our lives now it sure helps alot! Our 4th anniversary is coming up on dec 23rd and I am trying to think of something but I cant beat what I gave him last year (in his mind anyway) we went to a Redskins game in Minneapolis and they won so he was ecstatic! And I sat there wondering what I was thinking because I really hate football, oh well he was happy and that counted for alot since he has been there for me through all of this!
Anyway thanks for everyone being here to listen or that I can read up on alot of the good progress people make! I know I am not taking no from any dr about my health and I will keep fighting no matter how far we end up having to go but I am not going to stay in a wheelchair the rest of my life I am not giving up or give any dr the satisfaction of keeping me down or quiet when they screw up like the neuro who walked out on me, I will win in the end against the odds of the healthcare system one way or another. It is this site that reminds me when I get to the poor me victim stage of frustration and that I am very thankful for!

You all have been so great. I hope I didn’t give anyone the impression that I am doing poorly. Just like you said..paraphrased of course… I live like nothing is wrong with me. And really, there isn’t. I have learned to live with the numbness and no reflexes in my left knee. I told my daughter that if I woke up one morning and didn’t feel all of these residuals I would really think I am sick. I am and have been finished with pt since last September. I still go to the gym and work on the same machines occasionally, but probably not often enough.

Guess what I did today!! I bought myself three pair of “big girl” shoes! I am so tired of wearing tennis shoes. I’ve had to wear them for the past year because nothing else is comfortable with my sleeping feet. I hope I’ll be able to wear the ones I bought without much difficulty.

I am so thankful that I found you all.

Suzon

knowing others understand is a huge comfort. Thank you for all the good suggestions and encouragement. I’ll keep exercising as much as possible and will take off my AFOs while working out. I realize I should be sensible about my recovery – but dang that’s difficult!!

Bless you all

To finish the Thank You’s…

Norb…Thank you, my German friend. The Symantec company is sending me
an actual disk to re-download my security system. Without saying so, there
must have been a problem when I downloaded it. It wasn’t supposed to ask for a dvd. I had to go back into a live chat room again. I might take you up
on another problem…my contrast sign pops up here and again…I did the self
test and my monitor is fine…it justs pops up every couple of minutes. My
buttons aren’t stuck, so I don’t know what the problem is.

I hope you are feeling a little better, yourself…I can’t wait to hear that the
Rituxan is working for you.

Stacey…You are so right, after getting my groceries, I felt safe again. It will
be interesting to see what will transpire after my sister passes. I will be the
only one left, except for Aunts and Uncles, cousins, in Pa. I wonder, will
anyone check up on me, or will I be in the news…”Woman found dead after
several weeks…” You know those stories…but, I worry more about my cats
being able to eat. They are my children. Thank you for a lovely post…I do
hope you are getting your AFO’s…so you can have more dates with the little
man.

I am feeling better, thanks to all of your posts…what a grand and glorious
group you all are…

Miami Girl

Hello To Everyone

I want to say thank you all for your kind words and understanding of my very
unusual slide into self pity. You all took the time to respond and so shall I…

Valerie…Thank you for your sweet post and I’m glad that I could help you. I
bet it felt good to throw something!!! You aren’t a stranger from Texas, but a
friend for one in Florida.

Pattie…I, too, want my old life back. You know how frustrating it is to have
to rely on others, like I do, but wish we didn’t have to. I will keep my chin up,
thank you.

Pam H…Yes, sometimes I feel that I put denial into my thought process. Yes,
you did help me, knowing that we will accept our end, when it’s time…thank
you.

Joyce…Thank you for understanding that no matter what condition we are in,
we all have the reality hits, now and then…I am lucky, in that I have no pain
from any of this, just the disability of it.

Homeagain…Thank you for the hugs, and yes, I did let myself get into a funk
which I have never had before…it is frustrating to say the least.

Ali…Thank you for offering the hugs from all over…I guess we all need them
from time to time…the forum is a great group of understanding people.

Liz…I loved the animal picture, it was so cute. I am also stuck at home and
can understand you completely. I hope that you are still doing your exercises
to help your strength…I am so sorry that your mother needs surgery for her
fall…she will be in excellent care in the hospital. My prayers are with her – to
get better – and with you, to rest as much as possible. Thank you.

Julie…You always make me laugh. I can understand you about your former
job…my company didn’t feel that an executive in a wheelchair was aestheti-
cally beneficial to the company’s look. I should have sued them. Believe me,
you and I both will be first in line for teleportation.

Kazza…Thank you for your sweet post…my ex-husband has no idea that I
have this disease, but if it had happened when we were married, he would
have left in a heartbeat…he’s too vain, to have a flawed wife. I understand
how you feel…but know that he isn’t worth a second thought, because you
are much stronger of a person than he ever will be…disease and all.

Meadow…Thank you for the hugs! I agree with you, that Julie’s job was a
little trite in wanting her back after she was pushed out.

Lori…Yes, I can get in and out of a car and stand holding onto something for
several minutes. My sister’s friend took me to the grocery store…wow, did I
spend the bucks, lol…10 bottles (2 liter) coke, halloween candy for the kids,
deli food, cleansers, air fresheners, shampoos, etc….who knows when I’ll get
to go back. I did look online, there is a place called [url]www.wegoshop.com[/url] that
will go to your store and buy what you need and deliver it to your door for
$20.00 plus a delivery fee if the purchase is $150.00 or less…they are in all
states. I might have to do that. I have a neighbor that buys 8 cases of cat
food and 25lbs. of cat kibble evert two weeks for me, that’s nice. I have 8
cats.

I’ll post on another … for Norb and Stacey

Once again, thank you all…

Miami Girl

Thanks very much! I’ll check it out!

Thanks very much for everything,

Christina*;)

I did definitely have some ups and downs when I had infusions at a hospital…the constantly switched brands using those not prescribed and not informing either the neuro or me of the changes…I’d almost given up. So in the year I’ve had home infusions, there has been a consistency in the brand…that there was no noticible relief, relaxation of either the nerves or muscles was disconcerting. The effects have finally kicked in, thank goodness! I will be able to sleep tonight [unless-knock wood quick- we don’t have a power problem…
Seems as if half the country is under water or baking. At times I fear, both?
Again, thank you.

Miami Girl, does your cat sort of re-program the pump? I am trying to imagine that all…Since I have been trained by some very major cats, I believe it completely.

Thank you all for answering my questions, for your recomendations and your wishes. I feel very thankful and as many you, i have also found a great site here to vent and to find out i am not alone. Being alone makes everything more difficult. Right now i am listening to a song i really like and i am crying, i am crying because i wish i had never come accross this situation i really nerver imagined, i had always been so healthy… i am also crying because this song i am listening to reminds of something: i may not be completely fine, my health is not as good as it was, but i still can enjoy so many things, i am alive!!.This makes me cry of happiness. Everyday i watch the news and i realize that there’s suffering everywhere, i read about irak and how many people die there everyday that i conclude that i shouldn’t be complaining for i can do something so simple, like listening to a song, and i can enjoy it, i feel life is the greatest opportunity, even if it is sometimes full of obstacles. I hope this thought makes you all feel comforted, like it did with me….
Dawn Kevies mom: thank you for your words, you really sound like a caring, understanding person. Your son and you are in my prayers.
Mnsummer: why do you have to get your dose so often?

Now i would like to tell you somethng else. I finally got the ivig, it all went ok. The nurses were excellent, professional and kind, so was the doctor. I drank a lot of water and the doctor had a saline solution injected troughout the five days the ivig treatment lasted. I didn’t get any headaches, nor nausea. Everything was perfect. I took my last dose on sunday, it’s been a few days since that and i still have not had great effects. Since my neuropathy is mainly sensory it is harder to tell i guess, because sometimes it is difficult to describe what i feel or to tell if there’s a difference. What i can say for sure is that the pain and the sensations are still here. The doctor told me it takes a few weeks for the ivig to take full effect. I will wait patiently for the results, although sometimes when i am alone i cry because i am afraid of the ivig not working.

I would also like to share with you something that is worrying me. I do not have an insurance. As i told you before i used to be so healthy that it never occured to me nor to my parents, that i could get sick. I don’t lnow how it works in the US or in other countries, but here in Mexico you can only be taken care by the public health service if you work, and your company pays a fee to the public health service. Since i don’t work i don’t have an insurance. My dad had to pay for the ivig ant all it involved. This makes me so sad. He’s worked a lot during his life and now he has to spend the money he has managed to save on me. I feel this is unfair. He did not want to tell me how expensive the whole thing was, but i know is was very expensive. He told me not to worry at all, that he regarding to my health he would never doubt on spending as much as it is necessary, but i can’t help feeling guilty….

Thank you all for reading me.

I don’t have adequate words to tell you all how much I appreciate all your posts and `was `allowed to experience first hand what a wonderful family I have.
I am out of bed for the first time this sunday morning sitting in a chair next to it. My thinking is a bit hazy probably from the Vicodent. Carol went home last night to get some well-deserved sleep. The drain tube came out yesterday and all that is left is the dressing over the 1/2 inch burr-hole. 😮 I still have not looked at myself in a mirror. Tomorrow I will meet with the cardiologist to discuss ways to correct the atrial flutter in my heart. If left untreated it may lead to a stroke some day. It’s basically an electrical problem that can be corrected by applying a small electrical shock, kind of a heart tune-up. I’ve been on a heart monitor the entire time here which showed that eliminating the betablocker did not solve the problem. The whole incident, the trip to Thailand with the fall and the hematoma was really a blessing in disguise. Without that the problem with my heart would probably not have been discovered. Listening to my heart with a stethoscope does not show anything abnormal.

I have some other thoughts to share but that has to wait. I am fizzling out and need to call the nurse nto help me get back into bed.

Take care all

Thank you ALL!!!
All of the threads basically said the same thing, TAKE IT EASY AND REST!! It has taken the last 10 days for me to finally feel more like human. Today, I came to work for a couple hours and I am not feeling fatigued. I have been tested for MS and have not heard the results as yet. I truly think that I pushed myself too much and just needed to rest!! I am just typing at home and then coming to the office to print them off and pick up more tapes. That seems to be enough and then in the afternoons I lay down to rest at least a hour or 2.
Thanks again, it has really helped for all your support. I hope that some day I can return the favor!!
Love,
Teresa Rose

I guess it’s like the pain meds. Don’t let it get too bad before you do something about it. Many thanks to all for the information about only doing what I can recover from. I was able to attend my 4th graders bball game and am spending the rest of the day napping and resting and it’s working out. Many thanks again.
Claire

Thank you all for your comments. I really appreciate them. I have been living with this and drs saying that I am just gonna have to deal with it or say its in my head, one even said I have fibremiaglia(spelled wrong). lol but I know in my heart this is from GBS!! Thank you for having sites like these that we can come and learn more about GBS. Not sure that my new dr knows alot about GBS but I go again friday and I am sure gonna ask him and if not maybe he will refer me to someone else or study up on it. I have a couple of areas that have came up on each calf of legs that he is gonna remove friday. Wish me luck and Thank you all again.:p

Just back from the hospital after 5 days of IVIG. Feeling pretty tired and beat up but it seems like the slide has stopped. At this point, the problems are limited to feet, legs, hands and face. Perhaps a micron closer to being able to form a smile today but maybe my imagination (right now, not being able to move my mouth into a smile is the hardest part– 2 young kids who are used to seeing daddy smile at them). Looking forward to some rest and then tackling the PT/ST.

I very much appreciate all the kindness and good thoughts of friends, family and strangers. It’s been so appreciated and helpful. I hope as I get feeling a little better and as I fight to get back to work and the life that I want that I can provide a fraction of the support that I’ve received here and from others. Best,
horse

hi
i have some quite good news, my sister started writing yesterday, she could finally handle a pen and write all the names of our family. your words were all awsome, thanks so much, it seems that this disease is for people who are very kind and terribly generous, and with god’s will, it’s just a short episode in your lives however long it may seem and you will all soon recover, as i could see you are all very nice people, god shall bless you all for your good qualities, and generous heart.

I don’t know how to thank you , our new family, for the quick response. So far it seems as though I am doing everything the way you have advised. I have even gone as far as to document everything from day one. Yes I have questions and that is what the Doctors and Nurses are not liking. One thing that Billy had requested, way before all of this went down, was close communication between Doctors and ourselves. This I will not let him down on. Yes, nuerotin was prescribed. Yes he has gone through the Ivig treatment. His last treatment was July 17th, when he was taken to ICU. Now they are talking about the plasmapherisis. Billy has also developed pulmonary complications. A collapsed lung that is being watched daily by way of x-rays and blood gases. Calling and having Doctors paged to answer questions has been a number one priority on my list. Documentation of all that has gone on and the type of care Billy is receiving has been the number two priority on the list. I want answers and I want to know about any procedures that are being done. His Neurologist says that going with the plasmapherisis, the decision, would depend on the pulmonary doctor. Then proceeded to explain that it was an artform not a scientific form. This, from the same Doctor who told me there was no pain from GBS. All of this I had found out yesterday when I had gathered bits and pieces from one of the nurses in the ER and decided it was time for a gathering of the minds. I explained to these Doctors that the lines of communication would have no gaps and that I wanted to be informed of each step that was being taken. That is when the pulmonary doctor explained every question I had for him. As for the hospital staff, they haven’t mistreated Billy physically but there have been occassions where the nurse supervisor has been called in. This due to lack of pharmaciutical supplies and personal hygene supplies to care for Billy. Also a break in the skin on his back side which I requested a copy of the picture and have yet to receive. As for Billy knowing and understanding what is happening, the nurses told us the first day not to stimulate him by telling him that we love him, nor should we let him know what was going on because they said he would forget anyway. (Not remember). We found that this was wrong. Billy seems to respond better when he knows what is going on and that he has the love and support from his family seems to help keep him more at ease. Today we even went as far as to tape a voice recording of his two most favorite little shadows, his 2 and 3 year old grand daughters, and played it for him. He even tried to tell our daughter that he loved her. He also, for one brief second, noticed the date on the nurses message board and I had to explain to him how long he had been in ICU and why he was back there to begin with. Today, for Billy, this was a good day. As I read through your responses, I realized that so far I have handled things the right way. This has always been in the back of my mind. Have I done the right things the right way? And have I done all I can do to get the right answers? Knowing that I have the support and understanding of people who have been through this will help get us through. I know there are going to be many more questions that will need answers in the days to come. I know that we have a long road ahead of us but as long as we have support from family and friends, such as all of you, with gods help we will get there. God Bless All Of You………….Piper

You all have helped me more than you know! Jonathan was not treated with pp or ivig. I will certainly demand treatment. I heard though that it was only supposed to be done in the first two weeks of diagnosis. Regaurdless I will push for it. I will also request Neurontin. Thank you Gene! My husband is not paralized at this time, but there are days when he can’t get up much. To make things worse, he is a huge guy! He is 6’8 290lbs. We live in Ventura county, California if anyone knows of a good Dr. we are near Las Angeles, and Santa barbara. I am very glad I came to this site and I look forward to speaking with you all soon. Thank you for your support!

Crystal

Thank you all for all the information. My aunt asked me not to visit my uncle for now. He is very weak still. Since his lungs are very weak, she said that it is better for me to stay away with the dust on my body. After reading most of the posts here, I think that it is better for now (they are sensitive to noise, right?)

I have to thank everyone here for the support and the knowledge. We would never know this much if we were by ourselves.

Couple days ago, they gave him sleeping pills or some sort since they put all kinds of tubes in him. Yesterday, he was very uncomfortable from the bed sore. My aunt said the whole ICU only has one of those “special chairs” (I don’t know the term, but this is what my aunt calls it.) The chair is harder compare with the bed. And my uncle mentioned that the chair is comfy while he could still talk a few days ago. In order for him to talk, he has to breath on his own first. They tested his breathing and took the tube away today. But he was too weak that they put the tube back.

I keep on encouraging my aunt to hold on and not to give up. She understands, but seeing the man she loves is suffering, it is very hard.

Time is the key, I will keep passing what I learn here to my aunt to give my uncle better care. Please keep posting. I will check it every few hours. Thanks again.

Thanks for all the input/advice, it’s very helpful. He has undergone Plasmaphresis and is on his last round of IVIG today. From what I understand his condition is normal for GBS; he can only move his shoulders and head a little when he’s conscience. His inability to communicate seems to be frustrating him more than anything right now. Does anyone have any advice on that topic? Only thing I could figure out is to make a big word chart and post it on the hospital room wall then attach a laser pointer to his glasses. We’re going to try that out today since he’s been sedated for the last two days.

Thanks again