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?

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 .

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!)

--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.

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 ^^

--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.

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