Did the mri show any lesions/ You are right, typically the reflexes are non-existant w/gbs or cidp. But who knows, everyone is different. Was MS brought up? Is there inflamation on the optic nerve? Spondylosis is something to look up as the symptoms are similar to gbs/cidp and you did mention compression.

sorry to hear you are going thru this. I really hope you get answers and relief very very soon.

Once I was “recovered” (I love that term) my reflexes were either very slow, or hyper reactive (as is most every nerve in my body). To this day, it is the same. I got a diagnosis of GBS…cleared of everything else.

Your case is very interesting, I have not heard of anything like it on the boards before. I sure hope someone here has some info or can point you in the right direction. Please keep us informed of your condition, we learn and we are also concerned about you.

[QUOTE=fairly_odd_mother]sorry to hear you are going thru this. I really hope you get answers and relief very very soon.

Once I was “recovered” (I love that term) my reflexes were either very slow, or hyper reactive (as is most every nerve in my body). To this day, it is the same. I got a diagnosis of GBS…cleared of everything else.

Your case is very interesting, I have not heard of anything like it on the boards before. I sure hope someone here has some info or can point you in the right direction. Please keep us informed of your condition, we learn and we are also concerned about you.[/QUOTE]
[I]Good Morning everyone.
First I want to thank everyone who has replied to different posts. They have helped me and calmed me.
I was dx in October 2008, not back to work as still unsteady on my feet, problems with pain and fine moter skills, shortness of breath. I also have fibromyalgia.[/I] When I was given IViG in the hospitl.. we found out I was algeric to it. So only had 3 infussions.
Now on March 9th I will be having a total thyroid removed. Nodugles on both sides and maybe cancer.
I am not afraid of the procedure itself..the University of Minnesota surgeon will be doing it. Every specialist I saw I told them again and again the I have GBS.
What I am afraid for is how my body will react with everything. The surgoen told me that if I cant get the ansteasia out they will put me in the ICU and give me oxygen and “FILTER’ my blood.
Has any one had surgery after getting gbs?? Any problems??? Is ther something else that I need to notify the doctors about??
Since getting GBS.. my body seems to be falling apart.
Thank you for your help.

Hi Jules,
We just recently had another port put in. I had read literature that suggests one use twilight if possible. The anesth. was telling me it was not necessary general would be ok. In the cubicle next to us was a neuro aneasth. she overheard the conversation and came in and told the regular aneasth. that yes, twighlight would be better. She puts all of her ms or other autoimmune patients under w/ twi. if possible. The pp after is very surprising. Most docs don’t think to do that. It sounds like you are in good hands.. Another thing the neuro aneast. mentioned was that if you did need general, give a dose of steroids as well. I do not know how that would work being that you are getting pp, I do not know if it would have the same benefit after the surgery or if it needed to be done during the procedure with the general. I was wondering, did you see a marked change in your pain or symptoms when you were given the steroids? You mention the first episode in 2008, and this episode was worse and only easd with the steroids. Literature in the past that I have read suggests that gbs and steroids do not work, in some instances the steroids make it worse. Have the docs explored the possibility that youo have cidp, being that you bounced back this time right after the steroids and they are doing pp after the surgery? About the ivig, what was your reaction to the ivig? There is a simple blood test they can do to see if you are truly allergic, you may have just been reactive. The reactions can be severe as they were for us for 2 years, but we were not allergic. Sometimes in the hospital a powder mixture is used and mixed, it is gammaguard s/d. We as well as many others sometimes have a severe reaction to it…we had fever, itching, extreme headaches, vomitting, etc… As well, the infussion rate is very important in controling reaction. If you were able to get it for three days, it is possible you are reactive, not allergic, but only a blood test would confirm. If need be, they could try a different brand than what you originally had, make sure the infussion rate is slow, fluids, pre-meds and even give you solumedrol (a steroid) to help with the reactions. Ask for the blood work before your surgery in the event you should need the ivig.

Hi Erika,
I just found out that you are posting, that is good. The hospital you are in has a system where they allow people to send an email to patients. I hope you were given the one I sent today. Just take care and be well right now. We’ll talk when you are home and doing better, see if there’s a way we can meet. I have no phone number for you. I lost the number you gave me once before and your recent message on my answering machine wasn’t clear. You have my number, if I can’t answer will return call. Emails are easier for me.

I am in a remission and have not needed a neurologist, but did a research on the chance I might want one. Would you want the name of the doctor I thought might be good? I think he was at Florida Hospital.

[QUOTE=codystanley]Hi Erika,
I just found out that you are posting, that is good. The hospital you are in has a system where they allow people to send an email to patients. I hope you were given the one I sent today. Just take care and be well right now. We’ll talk when you are home and doing better, see if there’s a way we can meet. I have no phone number for you. I lost the number you gave me once before and your recent message on my answering machine wasn’t clear. You have my number, if I can’t answer will return call. Emails are easier for me.

I am in a remission and have not needed a neurologist, but did a research on the chance I might want one. Would you want the name of the doctor I thought might be good? I think he was at Florida Hospital.[/QUOTE]

Hi Liz;

Sorry to but into this thread but I would love the name of the doctor in Florida. I’m in southwest Florida and am having a difficult time with Neurologists and trying to get a diagnosis. If there’s a doctor in this state that knows about this stuff….I’ll drive there! Thanks!

Lori

Lori,
I sent you a PM in response to your reply.
Liz

HI Erika
Just wanted to let you know that I also have problems with some hyper reflexes..I was diagnosed in 2003 with GBS and have 2 relapses or extreme residuals since that time. Nothing severe for a couple of years.

I’m sure others will post so keep watching. Liz will be a great help and a wonderful support person.

Take care and God Bless

Sherry

For Lori and Erika,

I know I may few years  late, but a few years ago I went to see a neurologist-Dr. Alan Berger-and he located in Jacksonville Florida. He was the third neurologist I spoke too and he seemed to have much more experience with CIDP/GBS than my previous doctors. Unfortunately everyone’s case seems to differ

http://m.healthgrades.com/physician/dr-alan-berger-xtjss

Erika

Lourdes,

The doctor you saw was seriously mistaken, unfortunately she doesnt seem to know much about the treatments for CIDP – which is not uncommon in doctors, and unfortunately to the detriment of patients. IVIg is one of the most commonly used treatments and is successful for soo many, and if successful, as it seems in your case, should be carried on. There are other proven treatments such as corticosteroids (steroids), immunosuppresants, plasmaphareses and other experimental drugs such as Imuran, Cellcept and very aggressive chemo drugs such as Cytoxan that seem to help some patients.

[quote]
IVIg has become a mainstay for the long-term treatment of CIDP. There have been several studies proving that IVIg improves CIDP patients better than placebo and that the treatment is just as effective as PLEX or steroids. Like these other treatments, IVIg is not a cure. It controls the disease but it does not make it go away. [B][I]Thus patients with CIDP need to be treated for years or decades and possibly for life[/I][/B].
[/quote]

Your current doctor, that is on holiday, seems to know what he/she is doing. I would definitely have a word with them upon their return as the stand in doctor really should not be telling you things that she does not know about.

[I]I mean, can my body get used to IGV? [/I]

First, ask this doctor if you can get “used” to oxygen, food and sleeping!

Seriously, I have been on ‘IGV’ for a few years now. My doctor did put me on CellCept to see if this would take over the IGV. They are spreading my IGV treatments out. I used to get it twice every other week. This then went to every three weeks. I am now up to every 8 weeks. I still have symptoms (mostly numbness and chronic fatigue), but I am so much better. IGV is expensive, though. I believe this is why they are pushing the CellCept, which I have read has negative concerns.

Unfortunately, people react differently to drugs. A good neuro will find what works best for you as an individual. If you read through this forum, you will find many people being treated very differently. I would research as best as you and your neuro can, then stick to what is found if it seems to work. Don’t expect overnight success though. My improvement was a slow gradual progression.

A second opinion is always wise, though. I personally would not trust an ER doctor for my final second opinion. I have had too many problems with them in trying to give their advice, which turned out to be wrong. They certainly have a great role in the medical field, but I would go to experts in the GBS/CIDP field, not an ER doc who doesn’t deal with this regularly.

dennis

I’m sorry that you had that experience with that dr. Sometimes dr’s don’t know the latest & greatest treatments for CIDP…or other diseases for that matter.

Sometimes IVIG will stop working in some people. It’s a very small group of people that it happens to – it’s NOT common & it’s nothing that you should even be worried about at this point.

My daughter has had so many IVIG treatments that I’ve lost count. She’s now getting infusions once every 2 weeks.

If I were you, I would go to Google & research IVIG treatment. Print each article that explains the benefits of IVIG and the next time you go in to the hospital for a treatment, take the printouts to the dr who you last saw. Maybe she just needs a refresher course.

Good luck,
Kelly

[FONT=”Comic Sans MS”][SIZE=”2″]Lourdes’
I don’t understand, if you were in for your usual dose, how could she refuse you, and secondly, what did she give you as an alternative?:confused:
Do you have to go another month without any treatment?
Please don’t wait, if the IvIg is helping you, try to get seen by someone else as soon as possible. Both steroids, which are anti-inflamatory and CellCept, an immuno-suppressant, take weeks or even months to show benefit, and have side effects that IvIg does not.
I hope I am correct in saying this, I don’t want to scare you, but I encourage you to not wait for your regular Dr. to return, but to ask for a 2nd opinion at least.
Best wishes
Veronica [/SIZE][/FONT]

I’m big on letters and telling ppl. what I think about situations. I think after your meeting with your neuro., you need to write a personal letter to the ER neuro., explaining to them the way it should have been done.

Of course, you will catch more bees with honey so I would be nice. You never know when this dr. will run into another patient suffering from cidp and maybe this time, he’ll/she’ll do the correct thing.

Love, Lori

P.S. My 3 year old gets ivig every 3 weeks. Yes, he’s dependant on ivig, but aren’t all cipd patients that are on it, it’s because it’s working.

If you are at home and worried that you are having an allergic reaction, don’t wait it out. Go to an ER. It may turn out to be a mild reaction, I hope and pray. In any case, do not put off immediate medical attention if you don’t have anything on hand to take for it or no way to get it this late. God bless. I am praying for you.

Lisa, no need for inpatient necessarily, just mention to your dr the side effects you had with the fast rate. request them to slow it down and still do out patient. pre med with benadryl and tylenol and see if you have any problems afterwards. take care.

Lisa,
I get the same symptoms from the IVIg from most of the brands, we keep the drip under 200, do the benadryl and tylenol with each treatment but I also do 4 mg of a steriod before each treatment and for a couple of days after. This seems to help prevent most of the side effects. It might be worth a try. There’s another patient at the infusion lab that has the steriod injected into the IV one of the nurses told me, though they aren’t being treated for the CIDP. Hope this helps and good luck.
Pattie

do not take any 2 meds that say not to do so. if you think lyrica might be causing you trouble, stop taking it & see if what you think it may be doing stops. if it does, you know lyrica is not for you. neurontin would be what you would take in place of lyrica. you need to lose your neuro, he will do you harm. where do you live? i may be able to give you a recomendation. pls send me a email or private msg telling me the name of this neuro & his address. pls stop panicing, you are & will be fine. stress does not help during gbs recovery. take care. be well.

gene gbs 8-99
in numbers there is strength

Tammie,

Yes, I have had that feeling, it was April 05 and I thought I was getting GBS again. Came on suddenly. After about 8 hours in the ER, they sent me home, and the pain had gone by then and I was just feeling a little weak.
If you want, you can pm me your telephone number and I can give you a call.

These silly residuals can be quite the unexpected shock:eek: . Possibly with more rest, it will subside. Meanwhile, be good to you;)

I get that sometimes and it is gone by the time I can get an appointment with the neuro. After it passes it is hard to explain to someone what you were feeling and where exactly it was…..because my body is doing something else crazy like the vibrating in the muscles.

Each time I get something I go rest….hard to do that when you are work! Sometimes I use something warm to the touch and sometimes I use something cool. Sometimes I just rub my hands together or have someone massage either my feet or my hands. I will also go back to what I have done in rehab with the different things that descentitize my hands. One that I do often is lightly touch the sides of my hand like I was tracing my hand. I find that helps some times. Sometimes instead of the pain I get itching. Have you experienced any of these other things? I take it all as a sign of [B]G[/B]etting [B]B[/B]etter [B]S[/B]lowly!

kit,

i get itching big time. zyrtec helps. my doc recommends 20mg/day, twice the normal dose. i take it only when needed. take care. be well.

gene gbs 8-99
in numbers there is strength

hi tammy & welcome,

i do not believe it is easy to distinguish mild, med, or severe gbs. more than likely you need to rest much more lying down. if you think you are declining fast get an ncv from a gbs neuro. but it is the rest i think you need. take care. be well.

gene gbs 8-99
in numbers there is strength

[quote=gene]hi tammy & welcome,

i do not believe it is easy to distinguish mild, med, or severe gbs. more than likely you need to rest much more lying down. if you think you are declining fast get an ncv from a gbs neuro. but it is the rest i think you need. take care. be well.

gene gbs 8-99
in numbers there is strength[/quote]
Pardon my ignorance, but what is an “ncv?” I too get very tired. I just got back from a trip to Costco for some pain pills. The walk from the parking lot to the pharmacy and back to the car has left me ready for a nice relaxing read/nap by the pool. I guess that’s better than giving the horses a bath.:D

Jever I think it’s Nerve conducting test. To make sure that a person is not getting worse and if you are improving it will show. Some people with GBS may have there GBS becomes CIDP the Chronic version of GBS.

Sue

[QUOTE=tammieharrington]I became ill with GBS in July of 2005, it was a mild case however I still have some things going on and I was wondering if any of you have these same problems. I shake alot, mostly my hands but really at times it feels like my whole body. I become tired easy. I can not be around alot of people without becoming off balance and dizzy. I feel like my mind is in a fog. My case was mild but I still feel odd a year later, is this normal?[/QUOTE]
Balance, mind in a fog, fatigue and the others you mentioned are common to many of us who experienced GBS or CIDP.

NCV=nerve conduction velocity I think. What meds are you currently taking???

Jerimy

Sue, they put me on Ritalin to help give me energy and also to help with my concentration issues. Maybe that’s an option although I am sure because of his age. Good luck.

Jerimy

What about a natural approach, such as putting a cooling vest or scarf, or cooling the room around him to keep him just cool enough that he doesn’t want to fall asleep? Is he getting enough sleep when he does rest, or has he been checked for sleep apnea problems or other underlying causes of his sleepiness, which may be the source of the problem in need of treatment (APAP machine)?

Hi Sue,

Try reading up on Provigil, it’s used to improve wakefulness. Some Drs use it for their cancer patients and I know that a few people here have taken it.