I thought that I hadn't remembered the Dx in "House" as CIDP, but couldn't remember what it actually was, and knew that it wasn't a term I was familiar with.
At at my age (and with my meds), I forget sometimes and was hoping someone would clarify.
Optimumeg's link, & Glenn's "That makes sense" post brought it back to me. Thank you.
I didn't think that CIDP's symptoms fit that particular Dx.

This is INVASIVE???? I thought he just sits in a chair and gets hooked up (kind of like dialysis). I guess I'm completely off the mark here.

I read up on this and it says it uses the plasma of 20,000 donors and their antibodies. Thats why it's so expensive.

Anybody know why Alan's protein is 65. Might it have something to do with the fact that his mom had GB. Every single doctor we have seen in 18 years have always said "nothing to do with your mom having GB". But then no one ever ordered a spinal tap on him either.

Dr. Goldfarb wants to up his cymbalta but told him to check with Dr. Fred the next visit so maybe Dr. Fred can lower his zoloft. Because I said "I don't believe he has to be on 100 of zoloft and 120 of the cymbalta, I am concerned about Serotonin Syndrome.

She said "I know you're concerned but don't worry, Dr. Fred will explain and perhaps he'll take him off the zoloft". I then asked her "Isn't it true that different anti-depressants affect different receptors in the brain"? She said "that's absolutely right".

Alan is just sitting there letting us have a discussion. He doesn't understand any of this. He just wants his PN to go away. I've explained that he has to get more knowledgeable about his condition and he says "Melody I go on the internet every nigh, I go on the boards and I read all the posts, just because I'm not the type to post, don't think I don't read any of them". He also looked up IVIG and was fascinated. He asked me a very good question and I'm going to throw it out to any of you who might know the answers.

Now we know that the 65 in his spinal fluid means he might have some auto-immune stuff going on right?? Alan has psoriasis which is auto-immune. Alan also has OCD (which he says he looked up and he said that too is auto-immune). Our son has aspergers (Alan also has lots of aspie traits but is nothing like our son). Alan looked up autism and it said that is auto-immune also.

So am I to understand that if Alan goes and gets this IVIG, (and if it does what it's supposed to do), that Alan's psoriasis will clear up, that some of his OCD tendencies will clear up and his aspie traits will clear up (that is if he is correct in what he wrote that these things are auto-immune related).

I find this whole IVIG thing where you have to stay in a hospital for 4 days while they hook you up and put plasma from 20,000 donors into your body, well I find this a little off putting but many of you had it and it HAS helped many of you so Alan is all gung ho.

But will it also fix his psoriasis? This is not stupid question. Psoriasis is auto-immune (at least that is what his dermatologist told him).

So if anybody knows if Alan will have a whole new immune system out of this (and come out with a better immune system), (wow, wouldn't that be something), I'd love to know this.

thanks
Melody

It's one of those hit or miss things....in terms of treatment-well, it works/helps or not. In terms of recovery-well it might or not. Plain and simple...since use of IVIG for Agressive PN's and any follow-up research vis-a-vis IVIG's effectiveness and use for GBS and CIDP is little to none...very little has been published other than summaries and recaps of the last 15 years worth of work.

As for the 'whole being plugged into a bag' thing...well, for me, given the other whole TWO options in the world, it was ultimately a total NO BRAINER! Really, when you think on it, it's essentially a 'pasteurized/sort of homoginized processed blood product.. Can't bet much more basic than that. Options for me were Steriods-a no go due to osteo issues and plasmapherisis...more invasive still. Invasive only because the 'product' is foreign, and the infusion IV line is foreign also...

It's 'invasive' because, like chemo or any runof the mill vaccine...something 'not of yourself' or foreign is being introduced to your body. And the general s/e's of IVIG are headaches and flu-like sx's which last from one -5 days after for a monthly recipient [such as myself]

I really don't know IF it will clear the psoriasis....you can learn that there are sooo many anti-bodies and other genetic thingies that can be tested for...but, you reach a point where it just isn't worth the knowing! I don't know about the OCD/Auto-I connection at all...wish I could help you there...but some of those sites I listed should have good, solid references or resources for it... Different aspects of auto-I conditions affect different parts? that's pretty much my take on the heaps that I've read...

I wish Kmeb were on line...she's had 'puter problems and 'puter DEATHS of late....She too is an IVIG recipient, and could address it maybe better from her viewpoint.
Melody, all in all...science has some 'clues' as to how and why nerves die or are affected....Not all tho. They have fewer 'clues' as to the how and why of nerves regrowing....I simply want YOU and ALAN to know of, and learn and realize all the pros and cons of the whole aspect of treatment[s] before you commit yourself. The KEY THING HERE IS: Whether it works or not! IF it doesn't work, for you...doesn't mean it's garbage...More likely just not what YOU need! It's very much like the whole which-meds issue...in that some work long-term, short-term or not at all...others with side effects we probably would not want our worst enemies to feel. It IS, really, all a throw-of-the-dice thing overall. For you and Alan's sake, it's sure worth a try!

Does this all mean I should put in the 'stickies' my ref.sites on CIDP and IVIG? Will/Would anyone actually read them? Forgive me for being a tad cynical here, but it seems that there's more 'eddication' to be done?

Hugs to all! Pain free moments....seconds even to boot! - j

Well, Alan wants to go for it. He read all about it, the side effects, etc.
And I told him "remember what happened when they gave you celebrex, you landed in the hospital for 11 days ". SOMEBODY FINALLY LISTENED TO ME AND GAVE HIM BENEDRYL after 2 days in the ER. I kept saying, "it's an allergic reaction, he just started celebrex". But noooooooooo!!, they had the guys coming in with the hazmats suits and saying "maybe he has Rocky Mountain Spotted Fever". He was covered in a rash from head toe like I have never sen on anyone and his face blew up like a lobster and was bright red. All these teams of people were prodding and poking and I'm going". UH, please, it might the celebrex". They put him on benadryl and just to be on the safe side they put him in isolation and you should have seen the time when the guy has to come in and change the trash bin. The guy comes in all covered up and grabs the trash bin, replaces it and runs out of there.

I go out and yell at him "he's got an allergic reaction, you moron, what do you think he has, EBOLA???" By that time, Alan's swelling had gone down, he had had so many blood tests you wouldn't believe it.

He had one test for calcium that came back with a number so rediculous (can't remember what it was), that the doctor came in with the results, said "Alan, if this number was accurate, you wouldn't have any bones in your body, we are re-doing all your lab work but we are using my lab upstairs", "it's completely different than where they usually send blood too".

It seems that in Coney Island Hospital there is a hemotology department with their own blood lab that does separate blood work.

Alan was in the hospital for almost 12 days during that time, they finally moved him after 5 days to a general room with 7 other men. I walked in and said "Hello everybody, my name is Melody, and this is Alan". Everybody started talking to each other and I finally left.

I should have been a nurse in my previous lifetime. At least an aide. I remember there was a guy all the way on the other side of this room and I walk over to him and I'm talking to him and the other guys started to laugh and I said "what's so funny", and they said "this guy is from a nursing home, he doesn't even know his own name". I said "that is NOT FUNNY, he's a human being". But it was true. The guy knew nothing of what was going on around him. It was an interesting 12 days.

But I never hope to repeat that experience.

So we shall see if the doctor is successful in getting him the IVIG. We shall also see if the spine guy looks at his MRI spine films and decides "oh, yes indeedy, I can help this man".

will update!!!!

Melody

Im sure you have read this all already but in case you havent. There is a possibility of allergic reactions to the IVIG, so I believe they give you benadryl before they administer it. Infusion rate is also important to avoid side effects. Nurses have a tendancy to want to get finished and I have read posts where the infusion rate was speeded up to the detriment of the patient. There is poster in www.neuropathy.org named Eugene who has a lot of experience and information about the side affects and infusion rate for IVIG. I think he has had CIDPsince 1968!. From your previous posts it sounds like Alan is in pain but is able to go to the gym and live a relatively normal life. Ivig isnt a cure , its a 30 day treatment which helps alleviate the symptoms of CIDP or other autoimmune conditions. If it were me Id think long and hard about trading off 4-8 days a month of infusions and side effects if my CIDP werent a major threat or impediment in my life. If it got worse of course I would try it, but I would wait until then . Ive been offered it but it seemed to me to be swatting a fly with a shotgun approach. In the meantime I would try various things to alleviate the pain. I know im bucking the tide of the postings in this thread but I felt the need to add my 2 cents for what its worth.

Hi Joe:

Well, he had to stop driving (because pain in his toes were so bad he would have to shake his foot and you can't do that and drive a car at the same time, right? ). While he can't take opiates anymore (his PN was much worse before he went to Dr. Theirl), if there is a chance that this guy can get relief and go back to work and he can once again be able to drive, we can actually leave our house, and go places, and visit relative and lead a somewhat normal life. LIfe here all but stopped once we had no more car.

Access-a-ride doesn't go to the places where all my friends and relatives live.

And just to be able to get in a car and go shopping (especially when you did this for 20 years) and then BOOM once day, he had to shake his foot and he hit the gas instead of the break and then I said "No, no more driving". He had to agree and he gave up the car.

He knows about the side effects and the benadryl and I'm not too worried about nurses speeding up any infusion because his Dr. is Dr. Goldfarb who studied under Dr. Lantov (WHO KNOWS SOMETHING ABOUT IVIG ) as I have been told and Methodist Hospital where we live, well, it's VERY VERY GOOD, believe me. They know what they are doing.

And I'll be with him (at least I hope they let me in the room when they do this thing). Dr. Goldfar said the treatment is for about 3 months. The first time 4 days in hospital, then about every two weeks or so, someone comes to the house. I would assume that if they see anything detrimental happening during this treatment, they would stop it immediately, (OR I'LL SHOOT THEM).

So Alan wants to give it a try. Also, we have to hear from the spine guy.

I think if the spine guy looks at the MRI films and says 'AHA, I CAN HELP THIS MAN", and we go and see him, and he says to Alan,
"Alan, I really feel your neuropathy is caused by blah blah blah, and I can help you", that only then, Alan might not do the IVIG, but as he puts it now, "why not? I've got psoriasis, Menieries Disease, and protein in my spinal fluid, and my mother had Guillian Barre Syndrome" "This means I have auto-immune stuff going on. So let them infuse me with donors from 20,000 people" (that's what we read is in the IVIG thing).

This should be some interesting 4 days (if it goes through I mean).

They will let me be with him won't they???

I mean, who is going to bring him his homemade banana nut muffins?????

Melody

Hi Mel,
My ten year old grandson Joey goes for IVIG once a month, he is an AML leukemia survivor. I can remember his first infusion was awful, they had to stop it b/c he had such a severe reaction. Found out it was all in the "flow", he has to have it real slow and he preps before they go now with benadryl and ativan. The first time they had it here at home(Montana) when they came home from Childrens in Seattle my daughter went "wicked" on them. They had no idea that Joey needed it too be very slow and my daughter Amber stepped in and did all the IV settings for them and taught them all they needed to know. Theses days, Joey is ten now, mom drops him off and goes shopping, etc. and Joe knows how to set it and just kicks back with his game boy or watches a movie, and yes snoozes because of the benadryl, ativan cocktail. He has chronic GVHD from his second bone marrow transplant and it attacks his digestive tract and eyes, IVIG keeps him from suffering that pain and I think it is the neatest thing that science has come up with. Many kids died from GVHD before IVIG came along.
I think it is so worth the shot to get the immune system in order and I hope it works so well that he will be "Driving Miss Mel" around Long Island in no time. I can't imagine no car, out here in the wide open spaces there is no transit system, it means driving to do almost everything.
Hugs-Janna

Just as an aside, when my wife went through her odyssey of a 3 year broken/infected right tibia, I looked into hand controls so that she could keep her independence. They are around 300 dollars. I may need one in the future also. here is an example.

http://www.allegromedical.com/wheelc...s)&match_type=

Wow, that poor little guy had leukemia and now he's an old hand at IVIG. I didn't realize that the flow rate was so specific. And I thank you for bringing it up. Believe me, I'll ask questions like crazy if they go ahead and let Alan do this!!!!!

As for the driving with the hand controls. I told Alan all about that when he first got the neuropathy and his feet were killing him. At the same time he had to quit working, go on disability so there went the car and the insurance. I mean, he gets something like $950 a month. Can't have car payments, insurance payments and not work. Not possible in NYC.

So the whole reason Alan goes to the gym, eats what he is supposed to eat, and does what he does is to be able to go back to work (at least part time). maybe we can get a second hand car or something. Even to rent a car for the week-end and go to New Jersey to visit my relatives and friends would really be something.

All this (and my arthritis) well, it gets you down sometimes. My husband is so low on the totem pole compared to what some of you guys go through, I can't even believe it.

But honestly, for me, the hardest part is that I've lost my son. Haven't seen him in 5 years and well, once this happens, you're really not the same.
He has aspergers (very very mild) but he's a compulsive gambler (not mild at all) and all thoughts of home and family, well let's just say, he has no thoughts of us whatsoever and has told us so.

I'm kind of a cheery upbeat sort of person. I always try to be helpful and supportive but once in a while it just hits me that I no longer have my son in my life and it's nights like this that well, it gets very hard.

I think, that of all the disorders I have ever heard of, researched, etc. Aspergers has to be the hardest on parents. Essentialy, an adult aspie (that's what they are called), have little or absolutely no empathy for the feelings of others. I, myself, cannot fathom this kind of thinking process but believe me, it exists. They even have their own website wrongplanet.com.

Never thought this would happen to me.

Oh well, sorry to be so gloomy and doomy but I'm not myself tonight.

Perhaps tomorrow will be brighter.

regards,
Melody

You are always giving them to everyone else, and I believe you need one tonight. So...