Hi,new here, wanted to introduce myself!!!

Welcome to the forums Melody.

I’m hoping that the IVIG will help Alan. I am so sorry to hear that your MIL passed away. GBS/CIDP does seem to run in some families. We have a member here named Lee who’s daughter and Aunt and himself all developed GBS. We have had other members who don’t post anymore where CIDP ran in their families too. We don’t know why certain families have a higher incidence of GBS/CIDP. Wish that I knew why.

My husband had GBS/CIDP, I was his caregiver for the last 6 years of his life with GBS/CIDP. He passed away on 12-25-05 from a heart attack at age 58 which I believe was the after affects of GBS/CIDP. But the Drs say no, I say yes.
He never got better, just steadily worse over the 6 years.

But on the other hand we do have members who have acheived so very much and alot go back to work, others don’t.

My wish for Alan is that IVIG does him wonders as it has for others.

Take care 🙂

Hi MelodyL – Welcome! I’ve had remarkable results from IVIG for my CIDP. I’ve had 18 infusions since being dx in October 2006 and hope they continue to work so well. Interesting that you mentioned your husband’s mono. I was thinking the other day that I had mono in 1974, and wondered if this has anything to do with CIDP? I keep reading this site and trying to find a common denominator with everyone – because the docs sure can’t find one!!! Hang in there and keep us posted. Good luck and good health!

Hi Melody,

The reasons the Drs say you can’t inherit it is because it isn’t the norm for several family members to have the same illness when it comes to GBS/CIDP.

But we do see it here occassionally. The other thing is most Drs have never seen a case of GBS/CIDP in their careers, nor have the nurses, it is only touched upon in their medical books. That’s why they are so baffled and don’t know how to treat it.

I, too, had mono in 74. Diagnosed with GBS in Oct. 2004. When I came in with the early symptoms I was first checked out for MS since my sister was diagnosed with MS many years before. We’ve discussed it before in this forum that genetic tendencies seem to be a connector for some of these autoimmune diseases.
Brandy had it right, so many of the Dr.s have never seen GBS/CIDP. They would be better off to send the patient on then to refuse to admit they don’t know enough about it.
Welcome aboard…we hope we will continue to hear from you.
Hope your husband finds relief with the IVIG.

We don’t have GBS/CIDP in the family but we do have autoimmune diseases coming out of the woodwork.

My brother has diabetis, mother has RA, nephew has autism which they are now saying is autoimmune and our 2 year old has CIDP. Also, I’ve read that autoimmunes are passed down from the mother’s side.

My mother and her sister are both in the RA study and their mother had some kind of arthritis, probably RA but she always went to quack doctors so we’ll never know what she had.

My sister, each of her 3 children and husband all have had mono.

Welcome to the boards, it such a nice place for friends and lots of information.
Lori

Welcome Melody, glad to hear that the IVIG seems to be working.

Jerimy

Wow! I also had mono in 1974. How weird is that?? GBS in 2006. Makes me wonder if there is some connection….

My maternal uncle died 15 yrs ago from something that was never diagnosed… but he spent his last few months in bed with excruciating leg and arm pain, so I’ve been wondering ever since I was diagnosed…

Meanwhile, I never thought about it before, but I have two nephews with Alzheimers.

Hi and Welcome,

I have been recieveing IVIG 1x a week for the past 10 months and combined with Imuran ( an immunosupressant) It has done wonders for me. I have come from a wheel chair to being able to walk over 1 1/2 miles at a time. I hope it has the same effect for your husband as it has had for me.

Emily

Welcome Melody! I’m a little slow but my intentions are good,lol.

Hi Melody,

I think it’s a little bizarre that the pysiatrist asked if any family members ever used a brace. What does that have to do with any diagnosis? Nothing in my opinion.

Have you ever thought of seeing a different neurologist for another opinion?

I am wondering if Alan’s Mom ever had the flu vaccine, common trigger for GBS/CIDP. How about Alan, has he ever had a flu vaccine?

Hope you get some answers really soon.

[QUOTE=MelodyL]Wow, we certainly have interesting family connections now don’t we??

But I’m really really interested in anyone who has a family connection to anyone with either Autism or Aspergers syndrome.
I actually have my own forum “Parents of Young Adults with Aspergers”.

I did this because my son who is 25 is lost to us, living in another state, being diagnosed with aspergers (he is also a compuslive gambler), and is on SSI. He has never held a job. We never saw this coming. He wet to college, is very very smart but never worked. His is not sociable whatsoever and changed radically after he moved away.

Since no one actually knows what autism is all about (and some say it’s auto-immune), I am trying to see if there is any connection to this syndrome if the family has anyone with GBS or CIDP in it.

I’ll probably never find out. Most of the kids with AS (they’re usually boys), are mistakenly diagnosed with ADD as youngsters and given ritalin. They have super meltdowns and are put in Special Ed due to behavior problems. They are ultimately diagnosed with Oppositional Defiance disorder and some, like my son, grow up, go to high school, go to college on full scholarships, THEN CRASH AND BURN because they can’t cope after that.

Anybody know anyone like that in your family??? I’m not trying to pry, I’m just a mom, trying to find answers to why my son turned out the way he did.

Since it’s no coincidence any more that Alan has CIDP, and his mother had Guillain Barre, and his sister has pain, tingling between 3 of her toes (exactly like my husband ), but in her case she had Morton’s neuroma.

Lots of stuff going on in his side of the family and I’m just trying to do a “what if there is a connection in the autoimmune thing going on here”

So if any of you who have been diagnosed with GBS, or CIDP, and someone in your family had the symptoms of Aspergers or autism, well, I’d be very interested to hear about it.

We just might stumble across something here!!!!

Thanks guys!!!1
melody[/QUOTE]
Hi Melody,
My son has Cidp.
A friend of mine, her son has Aspergers. How you were describing your son when he was young is exactly how he behaves. Now no one in her family has cidp, but her mom has diabetic neuropathy, she has had mono, her daughter has major allergies, exema, she also has shaking in her hands, not parkinsons, but has petikia (sp) on hands and feet. not sure if this helps
Robin

Hi Melody, my son has had the ODD dx. he is 8 and has had many problems in those 8 yrs. 3 days after he was born he had to have a lp, he had a fever of unknown origin, later we were only told he might have a viral syndrome. he is totally opposite of his sister(13). jojo has night terrors and has had them since he was about 3 mos old. has had the tubes, adnoids, tonsil surg-still has sleep apnea and snoring, just not as bad, still has an occassional ear, double ear and outer ear infection-no matter how we care for his ears. is a headbangger-on wood, cement, me and other people-was really bad as a toddler, then slowed until recently. has bad unconsolable outbursts. and the list goes on. he has been seen and followed by ear nose and throat drs, pulm drs, gastro drs, neuros and of course his pcp. we had him on 25 mg stratterra until i made the decision to discontinue all meds due to the box warnings-they weren’t making his life any better. he is a great kid, very bright, artistic, musically inclined, very social. we have had him tested for everything the neuro could think of including autism, his neuro came to the conclusion of lets give him this med and wait and see how he reacts–that was a few yrs ago and he is just now growing and filling out alittle since i took him off the meds. i could go on and on about his developemental delays(which is what the neuro is calling all his problems now) but i can’t type much more.
as for history, mine is extensive for auto immune diseases and neuro problems, both in myself and in family members. during my preg with jojo i was on thorazine until i had a severe neurological reaction to it, and as with my 1st preg i was in and out of the hospital with hyperemesis the whole 10 months(he was 1 month late, until my dr finally induced labor with an experimental drug) and i was also on other meds both otc and prescribed during that time, not sure of all i was on at this moment, all under the advice of my ob/gyn. i keep asking his neuro if my history of illnesses have anything to do with his problems, and i’m always told i don’t know for sure-might and might not. so i just go with my feelings and say probably. my daughter is having alot of joint pains, swollen joints and so forth but nothing that is cause for alarm as our pcp says-might just be growing pains. gee i was told that about my same complaints when i was her age. thank goodness i have been blessed with strong kids.

Melody, the brace thing still has nothing to do with GBS/CIDP for a diagnosis.

Not everyone wears braces or AFOS for GBS/CIDP. So I don’t get what the physiatrist is getting at. How can she conclude anything from that is still beyond me.

Take care:)

Hi Melody,

Wearing a brace has nothing to do with GBS or CIDP. Not everyone with GBS/CIDP has to wear braces, that is what I am getting at.Wearing a brace is not going to tell the Dr a thing about whether Alan’s Mom or anyone else in the family might have had GBS/CIDP.

Take care. 🙂

Hi Melody,

I am so curious as to where the psysiatrist is going with this. Please keep us informed. We have alot of auto-immune illnesses in our family.

I have lumbar spinal stenosis and a variety of neurological problems that my neuro and Orthopedist thinks came as a result of the Polio vaccine as a child. I will be facing surgery one day to repair the spinal stenosis, I don’t wear a brace for it. I was paralyzed from the waist up for 3 days after receiving the polio vaccine back in the 1950’s, on the 4th day I got up and seemed to have never been the same, although I never let it hold me back.

I think you did a good job getting that info from your sister-in-law.

Melody ~ click on the search menu and type in “vaccines” or “vaccinations”. It remains [I]”The Hot Topic”[/I] on these forums. Most of the opinions and info to support them are there in ‘black & white’. Be prepared for an education!! 😀

Hi Melody – what in the world is a “psysiatrist”? My neuro does all those same tests at my office visits. Sounds like they’re not sure of a dx and are passing your husband around from dr. to dr. until somebody goes “aha”! Have you considered finding a neuro who is more experienced in CIDP/GBS? I got lucky and found one right off the bat – but had to go for an insurance exam (their neuro) and he had never seen anyone with CIDP. I knew more than he did! Hang in there, girl! Good luck and good health!

Hi Melody,

All vaccines can cause GBS/CIDP. My husband and many, many others developed GBS after a flu shot or other vaccinations. They tell you you should not ever get the vaccine again.

Melody, the flu vaccine could have exacerbated Alan’s condition.

I still have residuals from my bout with God knows what as a child. Here’s another one for you, a doctor I was working for insisted we all get flu and pneumonia and Hepatitis vaccines, so I complied, didn’t know about the connection of vaccines and GBS back then. Well I had another thing happen to me, I wound up with triple pneumonia 2 weeks after the pneumonia shot, was in the hospital for 10 days. So I can never have another vaccine again because what the vaccines were suppose to protect me from gave me a form of the disease. Interesting subject. Also note there is the highest incidence of Autism in this country right now and they are saying it is because of childhood vaccines.

Current ~ this week ~ statistics indicate that [U]1 in every 150 children in the USA have some form of autisim[/U]. Our grandson is in that group ~ was a healthy baby until after his first set of vaccinations. My heart weeps with all the side effects of modern medicine ~ especially the precious children . . .