As I understand it, the reason Melody's Alan is getting IVIG is he had an abnormal spinal tap. I haven't found any articles which recommend a spinal tap in the work-up for pn,and I'm concerned maybe I'm missing something.

So..

1. Melody: Can you explain what made the doctors decide to do this test on Alan? Would they do it on any neuropathy patient? And if you don't know, would you feel comfortable askign them? What diagnosis have they given his neuropathy?

2. Glenn and other researchers: Are there articles you know of which recommend spinal taps, and if so, when.

I'm concerned because I want lizajane.org to be as complete as possible, and if it's reasonable for certain patients or all to get it, I'd likee to have that on the charts.

Thanks

His neurologist works in the Peripheral Neuropathy Department at Methodist Hospital. I found this on the internet, and gave them a call, made an appointment.

I knew to print out and bring the Liza Jane printouts and showed them to Dr. Goldfarb. She said "yes, I have the exact same tests that I order for people with Peripheral Neuropathy.

She then did (and she did this herself), the emg and the nerve conduction test.

And she then ordered all the blood work. Don't know exactly when she ordered the lumbar puncture, but she said something to the effect "Alan, there is a treatment called IVIG, but it's usually indicated if a person has an auto-immune disorder. Auto-immune can present with Neuropathy". And she said "it looks like CIDP, Chronic Inflammatory Demylinating Polyneuropathy".

So she ordered the lumbar puncture, and when we were sitting in the office waiting for her to come in, she looked at the paperwork and she exclaimed "Oh, look at that, he has protein in his spinal fluid" I said "what does this mean?" and she said "well, it can be indicative of an auto-immune, and it definitely makes him eligible for IVIG. Then she got the IVIG paperwork (with his insurance company) in order. Took a while but it got approved.

And when he did the first five infusions (in the hospital), I remember she came to visit him and I said "isn't there a fool proof test to see if he has this CIDP, and she said "yeah a nerve biopsy by the ankle", and I said "oh the Sural Nerve Biopsy". and she said: "boy you've done your homework" and I said "no, we have just been doing this journey for almost 18 years, and after 18 years, you learn the terminology" She then said "you don't want him to get a sural nerve biopsy".

Last month, he saw his neurologist for a follow-up. I was not there. She did a complete neurological exam, with him walking on his toes, on his heels, making him balance, walk a straight line, etc. She noticed that his balance was much improved. It had no effect on his neuropathy pain, but it did improve his balance. Then she said "okay, we are now reducing your twice a month (called a double load), to one time a month home infusion, and he just had this last week. Tolerated it fine.

So, from what I can see, it does nothing for the pain, but it did improve his balance. I really thought this would take away his pain but I found out it (at least in his case) didn't do that. Maybe someday it will. He is now doing what I do and takes the methyl b-12 every morning.

He is also battling a foot ulcer (for over a year) and now wears the oft-loading shoe. His podiatrist is seriously considering sending him to a wound treatment center, (which I thought a person has to go and stay there for 6 weeks), but I found out it's a once a week visit. I had no idea. I also don't know,and this concerns me (does a person's HMO approve a wound treatment center if the patient is NOT A DIABETIC??? Tomorrow we find out. I'm called various wound treatment centers.

During his last visit on thursday, to the podiatrist,, the doctor changed the inside of the oft-loading shoe and padded it. Alan wore it for one day, and got a blister, so I looked in, rearranged the hole, and he is walking better. He kept saying "I told you, you should have been a nurse". He goes back to the podiatrist on Thursday, and we'll find out more stuff about his ulcer. This ulcer is taking a long long time to heal. Very frustrating.

So Liza Jane, I do hope I answered your questions.

Take care,
Melody

--if the neuropathy is suspected of originating from an autoimmunity.

It's often mentioned in concert with testing for Guillain Barre Syndrome. The thinking is that Chronic Immune Demyelinating Polyneuropathy is the slower, more insidious form of GBS, and often has a long-term, relapsing-remitting course but otherwise the two clinical entities are very similar. (I have heard them analaogized to different presentations of multiple sclerosis, just of the peripherla nerves.)

The Berger/Pully article in the Useful Sites section here--"Current Concepts in the Diagnosis and Treatment of Peripheral Neuropathies"--talks about it, in that is says elevated CSF protein levels are frequent, though lumbar puncture and nerve biopsy are usually not necessary to achieve a diagnosis:

http://www.dcmsonline.org/jax-medici...uropathies.htm

It's mentioned more prominently as a diagnostic tool--"obtaining both cerebrospinal fluid and a nerve-biopsy specimen is mandatory to make a definitive diagnosis of the disease, according to criteria of the American Academy of Neurology"--by this article in the New England Journal of Medicine (originally published in Germany):

http://171.66.123.143/cgi/content/extract/352/13/1343

It's also discussed in the Merck Manual (Sec. 14, Chapter 183):

http://www.merck.com/pubs/mmanual/se...er183/183f.htm

Much of the referencing here goes back to the following article:

Research criteria for diagnosis of chronic inflammatory demyelinating polyneuropathy (CIDP). Neurology . 1991; 41: 617–618. (I have yet to find it printed in an Internet accessible area on any of the retrieval systems.)

Of course, there have been many articles that dispute the need for lumbar puncture CSF protein findings to make a CIDP dignosis--interestingly, considering where and by whom Alan's neuro was trained, Dr. Latov and his group are prominent among them:

http://www.neurology.org/cgi/content...0/8_suppl_3/S8

http://www.neurology.org/cgi/content.../12_suppl_6/S2

There's also this revision from the above authors from Germany:

http://www.co-neurology.com/pt/re/co...195629!8091!-1

I could go on, but it seems in summation that, at least originally, CSF protein findings were considered an important diagnostic criterion, but, with the expansion of the diagnostic category, it may now be less important, though its presence does imply an autoimmune disorder that, in absence of central nervous system symptoms, would point to CIDP or a related entity and possible IVIg use.

I know personally, from having spoken with Latov, Chin, Moghekar, and a number of other researchers/clinicans, that CSF testing is part of many center's protocols, if for no other reason than to eliminate infectious meningial causes when neuropathic symptoms are present, and to check for
proteins that might point to MS or other central nervous system demyelinating conditions.

And the thing I find most puzzling about our journey the past 18 years is that absolutely EVERY DOCTOR THAT WE TOLD THAT ALAN'S MOTHER HAD GULLIAN BARRE, well absolutely every one of them said "Oh, it's not connected". And we must have seen every specialist, neurologist, rheumotologist, etc. etc. They all said "oh, you can't inherit Guillian Barre, and neuropathy can't be inherited.

Oh really??? Take a look at this: http://www.gbsfi.com/

I mean, who am I supposed to believe here. It just can't be a coincidence, right??

Melody

I am having a lumbar puncture to rule out MS. I have a diagnosis of Transverse Myelitis (TM) which can go on and develop into MS. The TM has caused the neuropathic pain (which I still have) and loss of bladder function (which is almost fully recovered). I have already had brain and spine MRIs.

My neurologist wants to be sure that there is no ongoing inflammation. I would therefore venture the opinion that if central nervous system involvement is a possibility then a lumbar puncture would be a necessary test.
Lupin

Liza Jane, Mayo did the lumbar puncture on me. I asked why and was told that it was indicated if you have autoimmune issues. I can't remember the results of mine, but I'll look it up.

Billye

with me Billye,i had 1 here in Columbia, and another at Mayo,same
reasons.

Mel you don't have to be a Diabectic to go to a wound center,I am
but Bob is not and we go to the same Wound and Burn Center,
at our Teaching Hospital. If they feel the need to do something
such as a Skingraff you would have to stay in a short time. Make
sure you find a good Dr. and wound clinci. Bob healed in a short period
of time since he went to this one. And if you saw my leg,well
it's awfull to tell the truth,from just below the knee down to ankle
look's and feels like a third degree burn. So go back Thursday
and hope the pig skin is helping.

LJ i had no pain or any problems with my 2... Sue

Usually starting out with the 24 hour urine testing [rule out heavy metals, look for blood in urine etc.] Round one of blood work, nerve conduction studies; followed by more blood work, MRI's; followed by more NCS's, serious anti-body testing consisting of the last round of blood work and CSF testing. Most docs only do that last round of testing IF and only IF prior blood work 'hint's at possible immune malfunctions. Possibly a second round of NCS's to see if there are any changes in the results - if there's any Auto-I activity...the nerve studies will show deteriorations.
Along with all of this, depending on the person- diagnostics for diabetes, vascular issues and who knows what else could be going on concurrently.

This site explains about CSF testing:
http://www.nlm.nih.gov:80/medlineplu...cle/003428.htm - while it's under GBS, the diagnostic processes are the same.

This test is quite useful to include/exclude a whole lot of illnesses under the 'Abnormal results' section.

LizaJane, I believe you have the CSF testing on your lists....What IS up in the air tho are the Sural Biopsies...Many of the bigger insurance companies will no longer provide coverage for them, providing all other testing has been done. Punch biopsies do still seem to be considered 'experimental' tho...

Glenn's source at the Merck site is: http://www.merck.com/mmpe/sec16/ch223/ch223d.html

However many publications citing it, I've got lots, just let me know - j

Mel,

About wounds - I heard of Aloevera Gel by "forever" that is good to cure such wounds.

Take care

Rina

Hi Rina:

I'm afraid Alan is way past the Aloe Vera stage. His foot ulcer is re-curring due to a malformation of the bone in his foot. That is why it heals, then re-occurs.

I just got off the phone with the Wound Treatment Center. Told them all about Alan and he was on the other phone. It was very interesting. I asked about hyperbaric oxygen therapy and she said "oh yes indeed but a person must qualify for that, and when I said "what are the qualifications?" she said "well, does he have a bone infection? and I said "no", and she said "Oh he just has an ulcer that does not heal?" and I said "yes", and I further said "He is not a diabetic" and she said "really???" and I said "the podiatrist said his ulcer gets better and then gets worse because of a malformed bone, and she went "Ohhhhh, I get it, well, usually, if that's the case, we just shave down the bone". And Alan immediately said "yeah, but my doctor said he can't do that in my case" (we don't know why).

So this person said "every case is unique and there's many things we do here". So we gave these people all the information they needed to check with Alan's insurance. And we are waiting for a call back.

He will go to his podiatrist on Thursday, we will say we want him to see a wound treatment specialist and we will get copies of his latest x-rays, and whatever. That's the best we can do. Oh, by the way, the lady at the wound treatment center told me not to use a betadyne wash anymore, (I haven't for a while). She said "use simple saline instead", (that's what I've been using). I bought sea salt recently, and I just put a bit in some warm water, and rinse and put the dressing on his ulcer. There's no more hole but there is dried blood and I have no idea what will happen on Thursday.

So we shall see.

bye for now, Melody