spinal taps/Melody
 

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

There are some mentions of it in the literature--
 

--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

To Liza Jane
 

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

Same
 

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

Spinal tests [CSF] are part of the diagnosis process...
 

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

Spinal
 

I'm wondering if all of you had blood tests indicating something autoimmune was going on that lead the doctors to order the LP.

I know that Alan has psoriasis, which is autoimmune, and had some positive autoimmune markers. Did the rest of you?

Because I have no markers for autoimmunity, and was seen at the Mayo Clinic, and by Dr Latov, as well as two other neurologists, and none suggested an LP.

Thanks

IN my case, and I can only speak
 

from my own experiences the testing for autoimmune markers was a two stage event.
The neuro who was in the process of diagnosing me was ever so politically correctly SLOW! So I went and got that good old 'second opinion' route. I don't know how it lucked out but I ended up with the head of the neuro dept at Georgetown Univ!! It was he that looked at me, had me do the walking stuff, the close the eyes stuff- I HATE that one TILT?, and then ordererd the MRI's to be set up and took a LOT of blood tests..He sent his diagnosis to ME with copies to my primary and neuro docs. As much as I respect G'town, I really cannot 'do' all the corridors from the parking lot to the offices...even w/valet parking. The G'town neuro ordered some more f/u tests and my neuro was nudged to take over from there-w/those blood work-ups and the spinal. The local guy now had the ammo he needed plus another doc to justify any and all concerns about diagnosis and treatments.
4-1/2 weeks after the tests came back I'd been cleared and started on IVIG.
My immune #'s were off kilter, I don't remember how much, but DO recall that it was flagged on the tests-for both the spinal and the blood works.. I also had other bloodwork#'s off kilter, nothing dramatic, but not enuf to then, nor do now make much sense. I WILL master those tests yet!
I believe in my case it was the pneumonia a few months earlier, how quickly the numbness spread for a while, then later only kept creeping up towards the trunk. I also believe that my thyroid, which had 'acted' up a few months after onset and before diagnosis [now diagnosed as Hashi's] was either a reactor or contributor to the AI#'s...but I'd only one blip in that quarter and no one thot to check the auto-i Thyroid #'s on that at the time, as basic TSH #s were normal once meds were adjusted...Same with the cancer aspect...that was NOT checked at the time of CIDP diagnosis. I do believe it's gonna become more common to have it done in the future tho...I don't think I could be the only human with all these things going on in such a short time span!
Long, complex-have had lots of time to think it out...I believe that it just took the pneumonia to start the dominoes falling, whether genetics or whatwhoknowsallels came into play. We are HUMAN, therefore we don't usually meet the criteria for being lab rats that are genetically engineered for much of research.
Well you now have the short version of my getting diagnosed and the whole blood work and spinal issues.
LizaJane, I was not at all internet conversant at the time this all was going on...I did and got all my opinions, second opinions and more opinions before I became so-it was pure instinct that nagged me to do MORE. I did learn tho - that I'd gotten things done correctily - thanks to your worksheets. Something I 'liken' to the 'roadmap' of the diagnostic processes. - j

Very
 

Well said J thank you. Sue

Not me
 

LJane,
When I went to Mayo, I was on high levels of methotrexate and Humira. None of my blood tests were positive, but...they had been in the past. Maybe 5 years ago. I was considered sero-negative But I did have 2 positive lip biopsies for Sjogren's.

Billye

Joan, Al (channeled by Melody), and Billye--you all had your spinal taps AFTER there was evidence of an immune problem in the blood.

I'm working through some articles--want to see if it makes sense for EVERYONE to have an LP.

What I think is happening is that there are some changes taking place in the diagnosis of neuropathy. There are some advocating only a few categories:

1. GBS: In this group, some would say all inflammatory neuropathies belong. And all improve with IVIG or Plasma exchang. Usually it's motor, but not always. I think they'd put neuropathy associated with connective tissue diseases (sjogren's, lupus) in this category.

2. CMT: All genetic except Hereditory tendency for Pressure Palsy belong here.

3. Diabetic
4. Toxic

i think with this categorization there are many fewer idiopathic cases, but I'm still reading. When I'm done reading, I'll make it its own post.

But I'd love to know if anybody here has had a spinal tap with normal bloodwork? I'm beginning to think it makes sense.

LP
 

Hi Liza Jane,

I had an LP after about a year with PN - which had been mild and then my sensosry nerves bite the dust after a 6 month long bout with C-Difficile Toxin (we dont know if the catalyst for the sudden loss of nerves was the intense infection for so long - or Flagyl, a neuro-toxin anti-bi I was treated with) or both, but when the docs got the results of those tests - ordered the LP - which was normal..... I believe my blood markes for ANA at the time were off - but not specific- and tests for SJogrens, MG, MS, etc. were all negative......... (my PN is predominatey sensory large fiber)

:confused:

And I certainly had the LP done--
 

--at the same time the spinal/brain MRI's were ordered, but that is because at the time the Staten Island neuros were loking for MS or another central nervous system demyelinating disease--neuropathy had not occurred to them, as my symptoms were acute, body-wide, and entirely sensory.

Apparently, no one there had heard of acute sensory neuropathy as a variant of Gullain Barre syndrome, or of acute gangliopathy; I found out about these entities later as a result of Internet research. 43-year old presents with acute body-wide neural pain, without a single abnormal inflammatory or autoimmune blood marker (including an immunofixation electrophoresis)--what do you look for? Central nervous system demyelination. But---and this is where I fault many doctors--the other entites are certainly possible, and should have been known about, and considered, especially by neurologists (who are supposed to specialize in these areas, right?). I had to go to Cornell Weill to access doctors who were familiar with these entities and who were aware of autimmune reactions that involved specific antibodies to components of peripheral nerve, and who could run those tests.

The interesting thing was, all the assays for known antibodies to peripheral nerve came up negative for me. But when Cornell Weill ran their own ganglioside agglutinin assay--a "gross" measure designed to just check for demonstrable nerve autoantibody activity across the spectrum--that was a slight positive, implying that I had autoantibody activity, but it was not identifiable as part of a presently known category. Dr. Chin and I both speculated that this might have indicated autoantibody activity unique to my own small-fiber nerve structure. He and Dr. Latov and their colleagues believe, and have written, that many "idiopathic" neuropathies, especially of the small fibers, are immune mediated by autoantibodies that we have just not as of yet isolated/identified; after all, even the "known" antinerve antibodies have only been identified in the last 25 years or so.

The Cornell Weill group is well known as a strong advocate of IVIg; in fact Dr. Latov has argued that even if one has no specific "identifiable" autoantibodies, the result on the ganglioside agglutinin test, or a result of protein in the cerebrospinal fluid from lumbar puncture (and lumbar puncture is on the Cornell protocol as part of secondary neruopathy investigation), is enough to argue for a trial of IVIg. This is considered a fairly radical stance in immunity circles at this point.

I was not offered IVIg, as my neuropathy was acute and apparently monophasic, slowly improving over time, but if my symptoms had assumed a more CIDP-like relapsing-remitting pattern, the staff said they would have recommended it. I do know there are some people getting IVIg infusions at Cornell-Weill based on what other researchers would consider less than slam-dunk evidence of autoimmune factors. (I've had some interesting conversations in the waiting rooms, as well as with Drs. Chin and Latov.)

glenn
 

so if you had a flare, you'd do IVIG?

There is something that has not been addressed in these postings about lumbar punctures.

Do you know that there are people who wouldn't have an LP if their life depended on it ? And I mean that literally. There are some people who do not go to the doctor FOR ANY REASON.

My friend's father had lung cancer, they found a spot on his lung and told him to come in a few weeks later so they could decide what treatment would be necessary. That was it. All he heard was "he had a spot on his lung". He never went back. He never went to another doctor again. He got sicker and sicker and would not go anywhere but to his bed. For some reason, they never had to rush him to the hospital. His wife, my friend's mom, was 62 and her husband was 74 when all this happened. She took care of him for one year. Then the people from hospice came so she could go shopping one day. The next day, my friend's dad died peacefully in his sleep.
I always wondered, if he had gotten treatment, if he could have beaten. it.
And forget about him ever allowing an LP.

And my friend around the corner, her huband was 63 and he had a pain in his stomach. He did allow some testing, they said he had colon cancer. That was it for him too. All he would allow was chinese herbologist and some kind of medicine they would rub on the outside of his belly and the herbologist gave him pills. Nothing worked. Only when he began hemmoraging did he allow his wife to call the doctor. That was it.

People's fears are preventing them from getting treatment. I know many people and not too many of them would ever go for a lumbar puncture. Even when I tell them that Alan went and because the guy used the fluroscope thingee, Alan felt nothing. They don't believe me. They all say: "Forget it, they're not doing that to me".

Thank god, we have these forums where we can bounce ideas off of each other and offer support. It's really neat!!

Well, at this point--
 

--if I had a "flare" that was very long lasting, and did not seem to be one that involved "healing", but actually (and perhaps other testing would need to be done with this, like another skin biopsy that had worse results than the previous one) seemed to indicate a relapse in my neuropathy, Iwould certianly consider IVIg (and I bet the Cornell-Weill people would recommend it if there was such evidence).

My greater problems lately seem to stem from the right side radiculopathy--symptoms there are basically stable, though they fluctuate slightly depending on what pressures are put on my neck and shoulder. The most recent cervical spine I had shows basically no change from the one I had nine months ago--there's still osteophytic complexes at C5/C6/C7 and a considerable neural formainal narrow on the right side at C6/C7, withonly minimal disc bulging. So, I'm not a surgical candidate, though I do bear watching.

(I've really got to make time to go get good myofacial release therpay on the right shoulder/back--that my insurance will at least pay for partially, LOL--my symptoms do seem to be somewhat correlated with the degree of tightness there. The neuros don't think so, but I suspect there may be a double crush phenomenon with the brachial plexus contributing to the symptoms.)

Glenn--You might want to give a go to my Feldenkrais practitioner before moving to anything more aggressive for that neck of yours. She's even more amazing than the amazing Dr Theirl. I sent my daughter to her, because her scoliosis causes her mucho back and feet pain, and after three sessions (through which she slept), she's totally pain-free. I am so much better it's magical.

Me: I saw my neuro today, mainly to see if I could get him interested in finding what was causing pain at L4/5 that improved so much with the transforaminal epidural. I worked into the visit a question about the LP, and asked him if it's true that most neuropathies fall into two groups now, CMT and CIDP, and if he thinks a sensory neuropathy like mine could be one of them. Oh, you're not CMT, he says, but you could easily be CIDP. I told him I never had a spinal tap, and he suggested that if the next step is a myelogram to look at my pain generator, he'd get fluid to send at that time.

So classifications work in many ways: axonal/demyelinating; sensory/motor; inflammatory/genetic, toxic.

Sounds as close as one can get...
 

to 'pigeonholing' the whole mass of mess?
Thing is, even with a SF testing, it doesn't/usually/often shows up anything you want it to. I belive that those on the Lymes' boards will be testimony to that part of the issue.. As whatever AI titeres are showing at the time of a tap aren't necessarilly what the titres really are?

As for the testing itself? Be absolutely SURE you know not only the procedure but the follow-up afterwards? In my case, I was clueless, and got the LP, then went to a nearby hospital for an additional blood draw [that took 2+ hours] and was not, in the desired reclined position for that duration...I did feel lilke I'd been hit w/a 2x4 in one spot for about 10 days? I am truly glad I had no greater s/e' than one very good headache afterwards.. IF I'D Known... I would have been far more cautious and an assertively appropriate WIMP! I guess I have to put in the fact that I was SOOO happy to be tested in a way I thot I should be tested, that not knowing the consequences or complications at the time were probably a blessing. The s/e?s Well, they ultimately were well worth the extra pains/discomforts...
It all well could have been lots worse, for that I am grateful. - j

PS IN the DC metro area, Lymes and West Nile ARE targeted possible issues, in some cases it's REAL...It is similar to PN and other Lots other AI issues.. they all overlap so!