Peripheral Neuropathy on the tv show HOUSE
 

Don’t know if any of you watched the latest episode of HOUSE the other night.

There was a young girl who had some kind of rare disorder called CIDP (or some such acronym). She was unable to feel any pain.

Anyway, she and her mom were in an accident and for some reason, all during the episode the doctors were saying “She has Peripheral Neuropathy”, (many times, they referred to this). Then someone said “well, check her B-12 levels” and the other guy answered. “We did and she was fine”, Then House said “well, check them again”.

So the whole episode this young girl is having paranoid delusions, etc. and Peripheral Neuropathy. And her B-12 levels were always normal.

I WILL NEVER FORGET THE ENDING OF THIS EPISODE!!!!

Dr. House is eating a sandwich and a lightbulb goes off in his head and he and his team rush the girl into surgery. He opens up her stomach and proceeds to remove a 25 foot tapeworm. It looked like a long long long snake. The whole surgical staff just stared going “Oh my god”. I was going “Oh my god”. Seems the tapeworm was feeding off of her and digesting the B-12 which caused her neuropathy.

Well, last night I had dream that there were snakes in my head and I was pulling out long wormy things and then when I looked in the mirror I saw little maggots. I had just watched an episode of NCIS and the episode opened with maggots on some dead guy.

So put the two shows together and you have Melody going to sleep pulling snakes out of her head and having little maggot things stuck in my hair.

I jumped out of bed this morning telling Alan I had snakes in my hair and he said “What???” then I remembered the episode of House and NCIS and I said “I am writing to these shows, they gave me such a nightmare”.

Did any of you see House.? After I told Alan about the tapeworm feeding off the girl’s B-12, of course Alan turns to me and says “Do you think I have a tapeworm?”

I got hysterical!!!!!!


mel

I saw that too Mel. It was a good episode! I love that show! If only we had a tapeworm and it were that easy to cure our disease! I love to watch the shows where they try to figure out what is wrong with people. I also like to watch the drama that goes on in the background. My other favorite show is Grays Anatomy.
You poor thing! Dreaming of Snakes and Maggots in your head! Makes you want to go directly to the shower, do not pass go, do not look in the mirror!

It just seemed that the girl who had that disease who had "no" feelings in any of her body and was only 16, don't you think her mother would have fought a little harder to find out why she was so sick? If it was my daughter, I would have camped in that hospital until I had answers. (Before the car accident they were in )

Poor kid, she was feeling all responsible for her mom's condition! Good for the female doctor who stood up to Dr. House and went to tell the kid how her mother was doing! It was important to her to know her mothers status.

Thanks for bringing that up Mel! It made good T.V., but I doubt it was very "real" as far as the symptoms were concerned.
Anyone else disagree?

Well, as one TRUE CIDP'er...
 

I was half asleep thru most of NCIS, awake enuf to switch channels...then promptly went into ZZZZZ land.. Woke up in time for some sit-com babble and to bed.

Yes CIDP isn't common. AND thanks to Mrs D and Rose and Billye especially I am more than aware about the B-12 levels. Bless you ALL for this super-good people! On top of that, my CIDP/PN may be paraneoplastic due to a BC, and the odds of that are, well, beyond fantastic! Is anyone out there an actuary or the like to do the calculations?

Yes, the 'odds' seemingly of getting 'IT' are slim...depending on which definitions you read. What scares me more are the ODDS one faces in actually GETTING DIAGNOSED, diagnosed properly, and GETTING TREATED promptly! I truly believe there are super many folks out there who have NOT been properly tested and thus, diagnosed then treated. GP's sometimes write us off, let it all go, and those w/agressive, PROGRESSING PN ultimately suffer until it's too late. Scarier still, is that we in this country have what's supposed to be one of the better[?] medical systems in the world...

Then why does no medical professional want to be our individual shepherd?

As for House and the sandwich...IT HAD to be a bologna sandwich?...what else would have inspired the 'tapeworm' thing? Egads! Zap the worm, problem is GONE! I still love that show, but, I bet I AM NOTthe only one here who spurts out loud...Do A, B or C! off of LizaJane's lists...tell me you've never? I guess, I'm a trifle frustrated that we all don't have a "House-Like" doc in our corner. If we had, well, we wouldn't be here.

Hugs to all! Just had to get this OUT of my system? - j

Me? I DREAM of PAINTBALL! Which color am I going to ZAP that bad doc with???? Barney Purple? Barbie Pink? Danger Orange? Organic or PUKE Green? The choices are endless...the fun is in the choosing, not the doing. It IS fun to think it tho..... I believe I dreamed this after a Las Vegas show on 'team building'......

I love the show too.

I was disappointed at the clue being "guilt." I never experienced it and have not met anyone in the hundreds I have communicated with that mentioned "guilt."

Note also though, that House said to just give her a B12 shot and see if she gets better. Since her symptoms had come on so quickly (due to the nitrous oxide they gave her), that shot probably would cause a quick turn around. One who has symptoms creep up slowly, as they usually do, would not be likely to have such an immediate turnaround. Too bad they didn't take the opportunity to mention methylcobalamin, which would have made that quick an improvement more likely.

They caused those symptoms to worsen very quickly with the nitrous. The mother was aware only of the disorder causing lack of pain. The new problems developed as a result of the nitrous.

The girl was susceptible to severe B12 depletion (through use of the nitrous) because she was already somewhat deficient due to the tapeworm.

By the way, the girls problems were first seen as PN, but the severe deficiency affecting her central nervous system damage was at the root of it. The PN symptoms are a fringe benefit :eek: .

rose

CIDP..... (If I get this right from posts I've seen on other boards)

C hronic
I nflammatory
D emyelinating
P olyneuropathy

Seems to be a chronic frorm of Guillian Barre Syndrome
in its most severe stages.
But I wsn't aware that CIDP could cause body-wide
lack of pain sansation. I always thought CIDP was painful.

(BTW - I saw it too - Fox TV - wouldn't miss 'House' cause it comes after Amer. Idol & my wife likes to watch that one - a lot!)

Generally, Nide44--
 

--you're right.

People with CIDP are unlikely to have that kind of full-body inability to feel pain. (There are such conditions, but they are generally hereditary, not acquired, and rarer than CIDP, or B12 deficiency.)

People with CIDP are much more likely to have dysesthetic sensations, parastheses, not infrequently painful, and numbness/loss of sensation, but this is generally "mild" and far from total. In fact, CIDP, like Guillain Barre, tends to present with motor symptoms greater than sensory.

I did not see the House show, but it seems to me if they were tossing around the CIDP term the more acccurate presentation should have included motor weakness and lack of coordination with "weird" sensory sensations.

They want Alan do do the IVIG thing!!!
 

We just came back from Dr. Goldfarb, the neurologist. She got the results from the spinal tap. Alan has protein. 65. She said that number is enough to warrant Alan going for IVIG. She also thinks his spinal stenosis is contributing to his neuropathy.

She said "Melody, the protein number is 65. Alan may have CIDP. I said and what exactly is that and she said Chronic Inflammatory Demylinating Polyneuropathy." (Remember, Alan's mother had Guillian Barre Syndrome)

Alan just stared at her. He has no clue what the heck she is talking about. I said 'Okay, so you want him to see the spine guy and you want him to do the IVIG.

Then she explained that she would get the insurance to go for it. Alan said "how do I do the IVIG?" and she said "You go into the hospital for 4 days the first time." Then in two weeks someone comes to your house for about 4 hours. (I'm pretty sure she said this). I said 'Oh, the home infusion thing?" and she said "Exactly".

So Alan says to me "I have to go to the hospital for 4 days?" and I said to the doctor "why can't he just come every day for 4 hours and then go home". She said "it's the way the insurance does it".

So we went to the spine guy to make an appointment but he's booked until the end of March, but his secretary said to "come back with the MRI films and a cover letter" and if the spine guy at Methodist thinks he can help Alan with the spinal stenosis, then he'll call us up and arrange an appointment. Alan is dropping off the mri films tomorrow. I'll write a little cover letter.

Now I have to go online and see exactly what this IVIG thing is.

Oh brother, I just went to this link

http://www.cidpusa.org/P/ivig.htm

Does this really work??

this journey keeps getting better and better.

mel

http://en.wikipedia.org/wiki/Congeni...ith_anhidrosis
She had the above ^^

OK, that makes more sense--
 

--CIPA as opposed to CIDP, though the tapeworm/B12 level would still not necessarily be connected.

Now, Mel--many people with autoimmune conditions (not just neuropathy) often report succcess with IVIg administration, although the improvemnt varies, and generally is no that long-lived; successive administrations, as that site says, are necessary to keep the improvements at a given level (by keeping rogue autoantibodies that are attacking tissue at lower levels).

From what you've said of Alan, he probably deos not have a classic CIDP case, as that normally involves considerable motor deficit and/or sensory loss, and his symptoms are primarily painful. There are, however, related autoimmume neuropathies:

http://www.neuro.wustl.edu/neuromusc...y/pnimdem.html

He may have a spinal component to his lower extermity pain, but I'm sure part of the reason for the IVIg recommendation is the high protein level in his spinal fluid, which, depending on the protein, would indicate some autoimmunity going on, which may have many effects besides neuropathy. (And people trained by Latov and company are big proponents of IVIg therapy.)

I just wonder why Alan would have to be an in-patient for that long during the first administration. When IVIg is infused to a patient for the first time, they normally want it done in a hospital to monitor the process and any side effects, but if the first infusion goes well a patient is normally allowed to go home at the end of the day and then come back the next . . .perhaps the insurance requires the hospital stay in order that it be completely paid for. IVIg is very expesnive, and many insurances will fully cover medications administered during a hosptial stay, but not for outpatients.

Ok Cidp...
 

Melody first off, www.gbsfi.com and www.gbs/org.uk are very thorough sites to explore. Another resource is https://nord.clinicalhealth.com
Lastly is a publication about IVIG called IG Living....read their back features and it'll explain the whole shebang.

Historically CIDP was considered a chronic form of GBS, but, look at the westul.neuro categories and you can see that many acquired and not inherited forms of neuropathies either are in or closely parallel to the inherited forms of GBS. Many acquired auto-immune conditions are crossing the line to the CIDP category daily, if I'm reading what insurance companies cover. Conditions approved for IVIG therapy are being expanded frequently. As for it having a 'mild' presentation...I guess I would have to differ strongly about that description. I am 95% sure my auto-i condition is acquired as there are zero indications in any family history and it is possibly connected as a para-neoplastic syndrome in my case, but there is no true way to prove it.

As for IVIG, the first intro to it is usually super-cautious, as it's a somewhat invasive procedure, similar to chemo. Some reactions, tho very rare, can be serious. After it's been seen to cause little or no reactions, and shows benefits, it's usually outpatient at either a hospital, an infusion clinic or at home. I've been in all 3 settings and there are good or bad aspects to each. With it I can WALK, I can sleep, I have moments almost pain free!
I can and DO feel pain, my seeking answers, getting second opinions and all that enabled me to receive treatments needed before it had progressed to the ultimate debilitation CIDP can cause. It is true tho that IVIG is used for many inherited conditions, but, it's also used for many acquired ones as well.

Depending on what statistics you read, it is effective in 60-40% of recipients, and how long a treatment 'lasts' is unique to each person. If it works for Alan, and insurance covers it [meeting the catastrophic deductible is a real trip each year] give it a try.

As for me, IF I were no longer able to get IVIG, I hate to consider what would be going through my mind. Options are very few.

Hugs and good thoughts to all! - j

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

Gee whizz! I'd like to know too!! ??
 

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 the one who needs the hug
 

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

Thanks Diana:

I've been going off on Alan all day long and he finally came over to me and said "I know you are having a hard time but please don't take it out on me" and we hugged.

We just had a long talk about Frank and he told me I have to "let go and Let God". I just needed to vent and we spent about an hour just talking. I talked, he listened. There can be no answers where my son is concerned, and that's why sometimes a mom wants to bang her head against the wall but what does that accomplish??? Nothing actually.

So we talked and I'm quietly coming down back to reality. It's like a death in the family but there is no closure. That's the big difference with a situation that we deal with on a daily basis.


And I do appreciate your hug. Thanks so much for your kindness.

Love, Melody

Ivig
 

Computer number 5 seems to be working! Reading this thread - its true there are pros and cons of IVIG - and if you get improvement from it -definatey worth it... but as Dahlek says - its an invasive procedure - every infusion is really a transfusuion of anit-bodies from thousands of people - so lots to consider.....

My insurance would not pay for the first 5 rounds as an inpatient (minimum 4 1/2 hours each - so I had to go to the hospital every other day), then was getting them weekly at home last year, miniumum 4 1/2 hours each - the rate may have to be slowed even more if side effects kick up during it.... there is an initial risk every time the infusion is started of shock - although rare - so the infusion is started slowly and increased usually every 15 minutes for the first hour.... the doctor will write orders for the rate... and almost always patients are premedicated wth benadryl and a pain killer.... again, while everyone differs, tiredness, dizziness, nausea, are common side affects and can last a couple of days -I much prefer them at home cause I go straight to bed afterward.

Some people feel immediate improvement - others subtle (I'm in the subtle group - even at a high dose) but the docs still arent sure of cause of my PN (which started as severe sensory and autonomic)... it has helped increase my energy level but has not helped the autonomic symtoms at all - (which the doc told me it typically doesnt unless it to treat inital severe onset GBS).... my treatments are on hold right now - I'm waiting for the amyloid specialist I saw to confer with my GP and order all the biopsies he wants done and thats my number one prority - but when thats done and if the amyloid is not found then I'm going to talk to my doc about a different brand of IVIG (each one may have a completely different effect on the patient) so that maybe getting thru them will be easier.....

The sites that Dahlek mentioned are very informative -please check up on them! If it works - its wonderful! Here's good thoughts that it will....:)

Ivig
 

Hi Melody,

I just thought I'd throw my hat in too.

I've had CIDP for Many years and receive IVIG every month as a stabiliser.

I've been on IVIG for too many years to remember now and have only had very slight reactions, a couple of times. Definately nothing to write home about.I've not had any trouble with infusion rates or anything.
If your infuser (for want of a better word) is trained, patient and can read a protocol, then Alan should have a good start.:)

Just like all drugs etc. there are pros and cons and you and Alan have to make this decision yourselves.

I'm sure that all of the information that you're getting here will help you immensely.

All the best
Keep us informed


Noong

Your dear son...
 

Dear Melody:

It is a terrible grief for parents when there is an estrangement from their child or children.

At one point my daughter did not communicate with me for about 15 months. This was years and years ago.

But it was not like the situation with your son. She was merely going through some bad times of her own and before too long was over them and now we are once again mother and daughter.

I have read articles about your son's malady and know there is no comparison. But I want you to know that I empathize with you. There was many a time when my husband drove me around in our car, with me sobbing.

Hugs to you dear Melody.

Shirley H.

Thanks to all of you for the information on the IVIG. I will be surprised to hear if Alan will actually go through with it after he reads ALL THE POSTS ON IT. I mean, I read them and I said "not me", I wouldn't sit there and get all that stuff from 20,000 people." But again, I don't have going on in my body what all of you have.

Alan only has the pain in the toes in both feet. It's much better than 5 years ago, but it is worth going through IVIG. Since it is his pain, only HE can decide. If it were me, I'd rub myself with Blue stuff and tiger balm but then again, I don't have going on in my toes what he has going on in his toes so only he knows if it's worth going through what I read you all went through.


Now this is for Shirley:

Thanks for understanding what I am going through (and have been going through for 5 years), and will continue to go through until I can stop being a mother (which, really!!!! can a person do that??)).
So thanks for the hugs and warm wishes.

Very much needed.

Melody

Melody, don't worry about safety...
 

It's more tightly controlled than opiates! Web up the FDA.gov and look for 'blood products'. The controls and standards on this stuff, how it's prepared, distributed and administered are very concise and strict. IF you get it administerred thru a top-notch facility or service, well it's better watched than gold!

The people who donate are more than thoroughly screened and checked out and the way the stuff is processed [what I can get about it that is...some aspects are trade secrets] is pretty darned safe...safer I believe than simple blood transfusions.

It IS expensive stuff...but it's precious SPECIAL stuff for a huge number of people for whom it works. Also, in the hospital I have met the neatest people who also get IVIG...and other stuff!

Here's hoping for the best for both you and Alan - j

Thank you my dear Dahlek:

The nicest people are on these boards. That's all I can say!!!!

Want to have a laugh? I'm sitting in front of my computer at 12:noon just trying to learn Mrs. Doubtfire's mailwash thing and my phone rings and it's my sister-inlaw and she goes "have the kids called you yet"? and I said "what kids"?? And she goes Janine and Brian (these are her daughter 36 and husband 37, she still calls them THE KIDS!!!.

I said "why are your kids calling me" and she says: "they are coming over to your house, they are at the Brooklyn Aquarium with the little ones and they want to come and see you". I said" "no, no one's called me but I have to hang up and put on some clothes".

You never saw someone clean a house, change from pajamas, clean the bathroom so fast in your life. As I'm polishing up the mirror the phone rings and I go with a big HELLO, (thinking it's the KIDS) and it's my sister in law saying "don't bother, they're not coming, the kids are cranky, they want to go home" I said "And I just cleaned my whole house (you know when you have company, it's called COMPANY CLEANING!!!!).

I started to laugh. So I changed back to comfortable pj's and now my house is sparkling. Alan wasn't even home, he went to some trade show in NYC.

So now I'm back trying to learn this mail wash thing. It's supposed to get rid of spam in my e-mail AND BELIEVE ME, I GET SPAM IN MY EMAIL.

regards,

Melody

Parenthood
 

Dear Melody:

No matter how old our "kids" get, we never stop being Mothers.

Shirley H.

Dear Melanie
 

I am really sorry to hear about your son. I am the parent of an only child too, and my child means the world to me. He is the reason I get out of bed in the morning and the reason I fight against my PN. He is growing up way too fast, and getting more and more independant. I have to keep on reminding myself that he is not mine as a possession,but it is my job to give him roots and then wings I guess.

But a mother is a mother no matter how old her children be.

When I think of my child growing up so fast, I think of this poem I read,
by Robert Frost.

Natures first green is gold
Her hardest hue to hold
Her early leaf a flower
But only so an hour

Then leaf subsides to leaf
So Eden sank to grief
So dawn goes down to day
Nothing gold can stay-


I hope this get's easier for you Mel,and remember always, you did the best job you could.

about the program...
 

Melody...it was Chemar who suggested the mailwasher, not I.

I don't use OutLook at all. I use Yahoo only. All weird mail in Yahoo goes to the spam folder... they filter it for you. I really like Yahoo for that reason.

Perhaps a PM to Chemar would give you the solutions to your frustrations?