Some new info

Peggy,

Please be careful, if you feel that your breathing becomes affected in any way, go to the ER straight away. Did your doc feel that the attack had stopped, is that why he said your breathing wouldnt be affected? I have gone back to read your posts and am a little concerned at some of the information you have been getting from your doc i.e. that the bladder isnt effected by GBS or CIDP, also that surgery doesnt affect things etc. Obviously the answer to both of those questions are that the most definitely could be affected.

Peggy, my bladder and bowels have been most definitely affected by the GBS. The more tired I get the more residuals pop up and say “hey, whatcha doin to us??”

Anytime a person goes under anesthetic there could be some “issues”. And with GBS/CIDP things could get complicated very quickly! Many of us have done relatively OK but you have to always have the awareness that these diseases add a complication. (during surgery, your breathing muscles/nerves a purposefully paralyzed). The same with cosmetic Botox (a toxin) ~ the procedure paralyzes the nerves in your face.

Personally speaking ~ I would not purposefully choose to paralyze my nerves especially for cosmetic reasons. Sometimes surgery is a necessity and then you must weigh it all out, make your decision and then pray alot!!;)

Peggy –

I honestly believe that you should go to the hospital. Having a tight feeling in your chest is NOT normal, nor is it good. On top of that getting confirmation that your chest muscles are paralyzing, I am very worried.

MANY people with GBS/CIDP end up on vents because they can’t control their own breathing. You need to take this VERY seriously.

PLEASE, PLEASE go get this taken care of.

I agree with with Judi & Ali in that GBS/CIDP can affect the bladder & bowels. It affected Emily’s bladder for months before we realized there was anything wrong with her. We just thought she was having accidents.

It is proven that anesthesia can & will affect GBS/CIDP. Your muscles & nerves are put into an extremely relaxed state. That allows the bad CIDP/GBS anti-bodies free access to them.

I feel very strongly that you need to get a 2nd opinion from another dr in your area. I don’t think that your current neuro knows much about CIDP/GBS. Many dr’s do not & they try to guess their way through the treatment of their patient. This is NOT a good situation to be in. You need someone who is familiar & up to date on these diseases.

Good luck.
Kelly

Peggy,
You sound EXACTLY like I did before I ended up in the hospital unable to breathe. You need to take this seriously and find a new doctor, or provide yours with better information if you can’t get to a new doctor. My breathing symptoms started out as a tight band-like feeling on one side, like a stitch in my side, but it only took 2 days to progress from tightness on one side to nearly complete paralysis of my diaphragm on both sides. I could actually feel the paralysis move across my diaphragm from right to left within about a 4 hour period. It’s not something to trifle with so please please follow up on this and don’t blow it off.

My bladder IS affected and surgery DOES make me worse. Not every neurologist is completely informed about GBS/CIDP – my first neuro openly admitted he was in over his head and wanted me to go to a university for diagnosis and a treatment plan and that’s what I did.

Please let us know how you are doing, it scares me to hear someone else going through that – makes my hair stand on end! 🙁

peggy,

i must also voice my concern. since your ncv shows decline, there is a fair chance there are those bad gbs antibodies working within you & that you need ivig. i do not trust this neuro’s opinion. your diaphragm could go while you sleep. you could get a lp. where do you live? as a minimum i suggest a 2nd opinion. take care. be well.

gene gbs 8-99
in numbers there is strength

Just to reaffirm what all are saying-get a second opinion and probably a new neuro. My bladder was most certainly paralyzed during the active part of the disease. As patients we should carefully monitor what our doctors tell us and if they are shown to be ignorant of something crucial time to move on. I think you can have the tight band on the chest feeling without it being connected to the lungs but why take a chance? There are many good doctors out there-try to find one without waiting too long. Good luck, Jeff

Peggy

Everyone is telling you the truth….please get a second opinion. I was in the
hospital when “I woke up at 3:35 am” with the tightness in my chest….I just
couldn’t breathe, nor able to buzz the nurse…one nurse walked by my room
and saw I was struggling…it went to Code Blue…

Also, the bladder and bowels are definitely affected by this disease. It got to
one point, where I was considering diapers (embarrassing), but the IVIG did
control it. Your body is full of nerves…anything can be affected by this. I
have read in the GBS/CIDP foundation newsletter, about a year ago, that death can occur, rarely, but can by shutting down certain organs…the heart,
the lungs, etc., all have nerves around them.

It is crucial that you take this seriously….my lung collasped.

Please take care of yourself…

Miami Girl

Peggy, You say you have read alot on this site, BUT You really haven’t read what the people are actually saying! I also have bladder/bowel involvement, I am Right Now dealing with a possible relapse-my uptenith one! You are playing with a loaded gun, and the sad thing about it is you are allowing the dr to squeeze the trigger-Your life is not a game of Russian Rouwlette!! Get a 2nd Opinion, especially if your tests results already show a paralyzed portion of your diaphram! Which is the Brain center of Your breathing and Living!! Go back through and really read the posts about All the people on Vents and the Hard times They are having! Be A Strong, Independant Person, speak up and Stand Up for Yourself, Demand treatment. You are the only one who can make the move, Do It-While You Still can. I know of several people who have lost their fight to gbs/cidp, I really don’t wish to hear of more, especially if it can be avoided!! Please Consider what All are telling/suggesting to You. Keep us updated, please.

Peggy did you get your lungs checked out? I can’t stop thinking about you – I told my husband last night about what your neurologist said and he freaked out – don’t tell me who your neuro is or hubby might hunt him down and give him a sound beating. 😉 I’m worried for you so please post as soon as you are able and I’ll try to keep this post near the top so you see it.

Please listen to all previous posts and go get a second opinion!!!!! Breathing can go fast! The first time I had GBS I went from waiting tables at Chili’s on Wednesday to intubated and on full life support in the ICU on Saturday! Act quickly, and get yourself to a Dr. or facility that can monitor you very closely until this resolves. Please let us know how you are. I will keep you in my prayers.

peggy,

if it turns out it is your residuals acting up & is is not a real gbs attack, & i’m not saying that is the case, you need to rest big time lying down. either way you should get much more rest than you do. take care. be well.

gene gbs 8-99
in numbers there is strength

Please if your having breathing problems go to the hospital, my wife’s respiratory system was completely shut down by the GBS in June 2000. She was dead for a short while, the Drs & other staff at Norton Hospital in Louisville Ky. Someway or other brought her back, I had 7 yrs with her that were filled with one battle after another. To which I lost her on 7/27/07 I am very thankful that I had that much more time to spend with her.