Just came back from Neuropathy meeting!!!
 

Wow, what an interesting meeting. About 20 of us, and there was a professional man there video taping the whole meeting. He told me he was doing this for the neuropathy association and they were doing a dvd series.

The speaker was a Dr. Cary (from Cornell). She was there to give a speech on neuropathy and the various causes and how pain happens. I learned about pre-frontal cortexes and thalmuses.

We were allowed to ask questions, so of course the first thing that entered my mind was right after she explained that pain sensations are processed by the thalmus and go into the pre frontal cortex (I think I got that terminology right).

I raised my hand and I asked. Everything has to go through the thalmus first right?? and she said 'right?" So naturally I said "So get rid of the thalmus". She laughed and said "if you did not have a thalmus you'd be dead". So I said "well, that ended that question". She laughed and said "no, it's not a stupid question, because there is research being done on stimulating the thalmus and what we've found out so far is that when we stimulate certain portions of the thalmus, another part of the brain, right next to this part of the brain, well it takes over and feels pain. She explained how nerves mis-fire, and all the various kinds of neuropathies.

There were people there with CIDP, there was an english gentlemen with Celiac Disease. Many people asked questions on chemotherapy induced neuropathy. Alan asked about trigger point injections and she explained that in cases of neuropathies, the doctors can't pinpoint the exact nerves, that's why they won't give Alan trigger point injections.

People there had undergone plasmapherisis and their insurance won't cover it anymore. Many people there had IVIG every two weeks.

But the main thing the doctor spoke about was meditation and bio-feedback. She said "there is no miracle cure for neuropathy ont he horizon, so you have to use pain management and she said "Now don't laugh, but transcendental meditation works, you just find yourself a mantra......and I said "oh, you mean OM, MANE PADNE OM, and she just looked at me and said "oh yes, that's the one, that's a good one, how do you know about that" and I told her I took a meditation class over 30 years ago, and I never forgot the chant that we all said in class. She explained that we can change our brain, that we have control over our pain, and our brains.

All in all, it was a most interesting group meeting.

Our friend Doug (the one who sends me the scary emails that have Linda Blair from the exorcist jumping out at me in these emails), well, he gave up his bowling night to come and join us . We met him 6 or so years ago at our first neuropathy meeting in NYC. That was a big meeting with over 250 people in attendance. They dont' do those meetings anymore. Now they do it at the CBS building in NYC and maybe 20 people show up. I can't believe that there aren't more than that number.

So everybody asked questions about lyrica (theyall gained weight on it), they wanted to know if new meds were being developed, and the doctor just said "right now, there is no miracle cure for neuropathy, because too many things can casuse it. But she did say that before you go to the doctor, write down your whole medical history and family background, that doctors appreciate this.

So there you have it. We had some good laughs, we all supported each other and I promised to wring Doug's neck if he ever sends me another scary e-mail.

Next meeting should be on November 15.

I had hoped that some of you guys who live in NY would have shown up. That would have been so nice. Maybe next time???

Oh, and this is the best part. At 8 p.m. when it was all over and we all left the building, there were fire trucks, police cars and no one was allowed down the street. It seems a man hole cover blew up right near our block in NYC.

The traffic was horrendous.

Oh well, that's NYC for ya!!!!

Take care,

Melody

I will make one of those meetings at one point or another, Mel--
 

--if only to ask how we can get more input into the Neuropathy Association, which I've often criticized for being very slow to advocate for this condition as compared with organizations for MS, Altzheimer's, Parkinson's, etc. (as many here have read, LOL).

I've noticed that many people from the Association, and many of the meeting attendees, seem blissfully unaware of other places, such as this one, that have ammassed considerable databases and expertise on the topic. The Association seems to almost jealously guard what it sees as its purview. I think that needs to be opened up a little. (It would be fun if Liza Jane and Joe and I went down with you, I think.)

so you learned
 

about the pain loop that centrally mediates pain in the brain. And in some people creates an overdrive situation, to augment/increase pain?

The seminar I went to, did NOT recommend trigger point injections, since the majority of the pain, is central, not local.

We were told that the drug companies are working very hard and have things in the pipeline that are coming soon, for this. In fact the fibro specialist said this was the next "frontier" in pain management.

Did your lecturer say that most of the pain in PN is central? Our lectures were on headache, and fibro. But RSD and IBS were included in the fibro part.

For autoimmune patients, I think the presentation is more peripheral. Like with MS. Did your lecturer break this down, between the peripheral and central issues? People without the autoimmune markers, may have a more fibro type presentation, perhaps?

Melody,

I TOTALLY agree with what was said about the brain in the meeting. My own Neurologist has recently changed my small fiber PN diagnosis to Central Pain Syndrome. And boy, does it ever make so much more sense to me. She basically said without going into great detail that the severe pain I experienced from the spinal disorders left an "imprint" on my brain. So, I have the central sensitization or whatever label someone wants to put on it. :) Basically, I have a hypersensitive CNS. And this is why most meds will not work for me or just barely take the edge off. Anyway, painonline.org explains it best. And I think this is why Klonopin helps me so much and the only med that ever has. It is just quieting my CNS. Also, along with my Neurologist and during the past two years I have had two other docs mention I must have a "CNS problem"!

Hi All:

One of the bigger points that the doctor said was that she explained the different way we perceive pain. She used this example:

"Let's say you are having a conversation with your friend and your face is in the direction of your friend and you are having an intense conversation with your friend. And all of a sudden, your right hand wanders and touches something hot. Your brain does not pause and say "oh I feel something burning, let me take away my hand". Your take away your hand instinctively. She explained that the brain does multi-tasking in this perspective.

She did go into the central nervous system, and she spoke of small fiber neuropathies (she never mentioned large fibers). She explained that the number one cause that most doctors immediately think of is Diabetes. Then she said "but we now know that there are many many causes of neuropathies. There are auto immune markers in certain people". She began talking in MEDICALESE and I looked around and many people, well, they didn't get it. I didn't get a lot either, but I managed to comprehend more than I ever could thanks to my coming on these boards.

Oh, one more important thing. I brought up the topic that many doctors do not take people with neuropathy seriously. They say to them "it's all in your heads, deal with it". She said "unfortunately doctors are not trained in neuropathy". And I said "why on earth not?" And she said "well, many doctors never come across a case. Some doctors say they never heard of neuropathy, they say "what is neuropathy?"

That's when I said "that's baloney, because diabetes has been around for centuries and we ALL know that neuropathy is a side effect of uncontrolled blood sugar, so how can doctors not be aware of the seriousness of neuropathy pain??"

Then after a while, after everyone had asked their questions, (remember we are being videotaped), I politely asked the following question:

"If a new patient came to you and said he was diagnosed for 15 years with Idiopathic Peripheral Polyneuropathy, and oh, by the way, his mother died from Guillian Barre Syndrome", would you just say "Oh, it's not connected"???

She looked at me and said "well, obviously, I am specializing in the field of Peripheral Neuropathy, so I don't pooh pooh anything. I would look into that, of course I would". I then said "well, for 15 or so years, my husband went to countless doctors, neurologists and this kind of specialist and that kind of specialist, and absolutely everyone of them, as soon as I said "his mother had Guillian Barre Syndrome, do you think there might be a connection?". Absolutely every one of them said "No, there's no connection"

This doctor then said "well, I can't speak for what other doctors have told you, but I would definitely have looked into the connection. I then told her "finally someone ordered a spinal tap and they found protein and he is now on IVIG." She then went on to explain that for some people IVIG works miracles and for others, it does nothing. For some people Plasmapheresis works wonders (Doug had undergone plasmpheresis 6 years ago, until his insurance cut him off). They even put a port in him at the time.

Then she said "there are medicines that will work on some people but the side effects are horrible, we are trying to do more research into neuropathy but doctors really don't know that much about it. It's an ongoing learning process. One of the people at the table said "we have to be our own advocate, doctors need our input, they just don't get it".

Oh, I told many people at the table about these forums. I had mentioned them the previous time I was there. I don't know if they visit, or lurk or whatever. But some of these people have pain and many just have numbness.

Oh, and this is important. We spoke about CIDP and GBS. The doctor said "we usually don't say CIDP anymore, we say AIDP. Then she explained it's now being referred to as Acquired inflammatory demylinating polyneuropathy.

She further said "when you get it immediately and it hits you and then it goes away, it's Guillian Barre. When you get it and it's prolonged for year, we call it CIDP, (NOW AIDP).

Then I said to her "I'm going to tell you what I'm taking and you will probably laugh at me (I was about to mention the Methyl B-12), and she said "I would never laugh at anything, I am always open to various ways people get help with their PN)> I explained about my taking Methyl B-12 and what it did for my burning. I said "it didn't help my husband, but it saved my life". This was exactly what she said "I would only make sure that you are not taking all this in a B-complex, like for example are you taking many b-complexes in one day"?? I assured her that no, just the Methyl B-12. She said "oh, that's good, but be wary of B-6, too much is toxic (everybody was writing all this down). She said "we have found out that B-6 can make neuropathy worse". So be careful what supplements you are taking. Don't take more than 50 mcgs of B-6 a day. She said "the other B vitamins are just fine" (Hey, finally found a doctor who didn't put down most of the B-vitamins.)

Wow, I learned lots of stuff at this meeting.

Oh, some of the people there said they had charlie horses and toe spasms all the time. These were the people with the CIDP. Alan does not get this.

These people said there is supposed to be a prescription quinine pill but that they can't get it any more but it helps with cramping.

The doctor said "just drink tonic water".

So I hope I have covered most everything I can remember.

You're lucky I remember anything any more. I'm almost 60. Oh my god!!! lol
And yes, Bob, and Liza Jane, you must come, if you can, to the November 15th meeting. I'll be sure and make sure of the date and post it on these boards.

Oh, another point the doctor brought up was depression and anxiety. She said "this is a vicious circle. I don't mean to pooh pooh your depression, your anxiety or your pain, but pain is made much worse by anxiety and depression, and if a patient came into my office and that patient had neuropathy and that patient told me she wasn't depressed, well, I would think there was something wrong with that patient, Of course you are depressed, you have pain, and pain makes the neuropathy worse. So it's a circle". "That's why I believe in bio-feedback and meditation, you all should try it for 30 minutes each morning, get yourself a mantra, it could be anything, let's say if you are catholic, it could be a religious saying, just keep saying it over and over, until you change your brain patterns".

This is exactly what she said. God, my brain puzzles must be working overtime, I'm remembering all this stuff. lol

melody

To: Mrs. D.

You asked if the lecturer spoke about PN pain being central??

Believe me, when she started talking about Pre-frontal cortexes and the Thalmus , etc. that's when I had to really struggle and comprehend what she was saying.

From what I observed, these 20 or so people at the meeting, wanted to know if there is a cure on the horizon. They couldn't care less about pre-frontal cortexes. These were people who used canes and walkers and moved very slowly. These were people who, when they went on neurontin, got so drowsy, they had to get off of it.

One guy had narcolepsy and he still drives. He is on neurontin and lyrica.

There was a really skinny lady there who had just gained 20 lbs in 2 weeks on lyrica. And she was skill skinny.

Can you imagine my doctor telling me "Melody, you need to go on Lyrica". I would give him such a look.

lol

Kathi as far as your neurologist changing your diagnosis to central pain syndrome, from small fiber PN, isnt your pain caused because of damage to your small nerve fibers? You may also have central pain syndrome but wouldnt you also have small fiber neuropathy? The two do not seem to me mutually exclusive to me. For instance, if you broke your tibia and this set off a central pain syndrome (rsd), you would still have the broken broken bone until it heals or if it heals and also would have central pain syndrome.

If'n ya had ta.... you would.
It IS possible to successfully diet on Lyrica (or Neurontin) after weight gain.
It just takes determination and discipline.
(my grandmother called it 'shpielkas')
(shhh-peel-kass - Yiddish)

Mel.....ya got BOTH !

Joe,

Actually and according to painonline.org they are linked. What that particular website helped me the most with is how the nerves act or what is occuring when they are damaged. It makes more sense to me simply because every test I have ever had came back negative for anything...as in idiopathic and she even said it almost didn't show up. Anyway, her reasoning is pretty much what Melody is spelling out about the brain and such. In any case, this is probably why meds like Neurontin and Lyrica didn't do a thing for me. Neither did the supplements. But the benzos worked! Xanax was tried as a last resort, and that was the ticket. But I didn't want to take 3 a day so she switched me to Klonopin and it has helped. I am just saying that being a spinal disorders person what I have read on this other site makes much more sense to me. So, it is possible I have both...no need to really differentiate since it is all neuropathic pain anyway. But it does explain to me why most meds did not work.

Bob:

I've got BALLS!!!!

lol

P.S. You HAVE to come to the next neuropathy meeting. We'd all meet each other and learn stuff. And they serve nice coffee in carafes. Do you know people came into the meeting room (they had just come in from Minnesota and Colorado), they had nothing to do with the neuropathy meeting, they just wanted to look out of the window and see the view from the 33rd floor. in NYC. Well, I went over to the window and I had to step back. I was afraid to look down. jeezz...

im glad that you have found something that works for pain for you, that is the important part

To sort of clarify--
 

--since my neural investigations included a major component of looking for causes of central pain syndrome, such as MS and seizure damage . . .

Central Pain Syndrome is possible as an adjunct to any of a number of conditions that cause pain--neural or otherwise. But perhaps it is good, for the sake of argument, to divide central pain into the kind that comes from central sensitization--that is, when long term-pain signals from damage in other parts of the body cause trophic changes in the neural network and a perpetuation of "painful" firing patterns, such as is assumed to be happening in reflex sympathetic dystrophy/complex regional pain syndrome--and that caused by direct traumatic damage to the spinothalamic sensory tracts. The latter, which is what the painonline.com people usually refer to (I'm a member of the CPS alliance) simply has a different starting point--the initial damage is in those spinothalamic tracts, due to stroke, MS, HIV infection, B12 deficiency, seizure damage, and a number of other possible causes. The symptoms, though, may be body-wide, and may be indistinguishable from those of widespread, diffuse peripheral neuropathies, or from those of RSD/CRPS or other central sensitization syndromes.

There are, supposedly, some clinical observations that can distinguish Central Pain from direct spinothalamic damage. The symptom of "temporal summation" is allegedly one; this occurs when initial slight stimulatin is not immediately parasthetic or painful, but becomes so over some seconds in an increasingly intense manner, and then fades slowly over seconds to minutes. Supposedly, peripherally damaged nerves are painful immediately to touch. But, I have spoken with people with no central pain signs, but evidence of peripheral neuropathy, who have this temporal summation symptom, and there are people who've experienced both types of sensations.

Moreover, I suspect Kathi's report of her drug responses may not be universal, either. While the mechanisms of Neurontin and Lyrica are not fully understood, it is surmised that they work by making the inhibitory neurotransmitter GABA more available to the central nervous system, stopping or at least slowing erroneous propogation of pain signals. So, since they have CNS actions, they might work on both peripheral and central syndromes--indeed, the anti-epileptics are prescribed for people with central pain such as from MS and for those with pain from peripheral damage.

What I do suspect is that anyone with long-term, chronic pain probably experiences some degree of the first type of central sensitization. In that case, nontraditonal therapies to re-train the neural firing patterns--visualization, meditation, targeted exercise--would seem to have a very good chance of succeeding. I speculate they would be somewhat less effective for the second kind of Central Pain (primary spinothalamic damage).

Ooooh, I just have to sound off about one of my pet peeves. I am well acquainted with meditation, have used it in the past and present, and know all about the brain wave changes. It has worked for me in the past for acute pain and mild pain. but give me a break! When you have pain at the 8-10 level, 24/7, it just can't handle it. Melody, at your next meeting, ask that doctor how she would like to undergo 12 hours of abdominal surgery with no anesthesia. Tell her that she could just meditate through it. I am sorry, but I don't think that people who say things like she did have any comprehension of the intensity of pain that some of us have, and it is very cruel to imply that if we would just put a little effort and self-discipline into it that we could control it all with our minds. It so diminishes the terrible suffering that many of us have.

Okay, so much for that rant. The info you got at that meeting was very interesting, Melody, and certainly generated a lot more information and sharing here! I hope you go again! Thank you so much for going and sharing that with us! It's a good thing that I do not live in NYC, though, or I would have ripped her face off. And normally I am just a sweet little Southern church lady. Boy, I would've liked to have been there if MrsD could have gone, too, though.

MrsD, did you report here once that Tonic water did not have enough quinine in it to have an effect on leg cramps? Or did I dream that?

Susan:

I agree with you 100% about the pain thing. I looked at the faces of all the people at the meeting and I said "oh, right, they are going to get up tomorrow morning, cross their legs in a yoga lotus position, and start chanting".

Don't think so. I looked over at Alan, when she was talking and he looked at me and said "don't even go there". See, this might work for some people but the people with the level of pain you are talking about, well, I believe the doctor was trying to say "hey listen, we don't know why lots of people get PN, we do know it stinks, we do know that some meds work for some and some meds do not work for others, but what do you expect us doctors to do?? We are not miracle makers, so until this little miracle known as a neuropathy cure comes along, then you have to do whatever you have to do to take care of your pain".

That's the message I got from this doctor. She was a very nice, very caring woman, but until the physician themselves have PN, then and only then, can they get up and say "Oh, have you tried meditation"??? She meant well, and we did appreciate all she had to say. But I really believe the people thought they were going to hear about some new "treatment plan" for PN.

She never went into the Rebuilder, or anodyne therapy. Maybe if she comes back I can ask her.

I almost did ask her "do you have any idea what's it like to have PN for 18 years like my husband, to never be a day without any form of pain".

But she DID come and she DID try to help out as best she could. And the whole thing was videotaped. So you never know. You might just find me out there on the discovery channel some day asking my stupid question. "Do we really need a thalmus??" lol

Melody

Thanks for clarifying Glenntaj,

What I really believe happened is that my CNS became vamped up from constant/severe pain from cervicogenic headaches. And this lasted for 3 years before anything was done surgically. Having CPS makes far more sense to me than having PN although I suppose I could have both. I need to get more clarification from my Neurologist. But I believe because of the spinal disorders and ongoing or subsequent pain is why she changed the diagnosis. And also because all tests were negative. Then she made mention that even with the QSART it barely showed up. And something else she said too...that I had fibromyalgia type symptoms but without having fibromyalgia! And why the anti-convulsants and anti-depressants didn't work well I just don't know. Actually, Neurontin INCREASED the burning sensations. It was only the benzodiazepenes that took the burning sensations down and opiates that helped to take the edge off what I call the mechnical type of pain. Anyway, the bottom line is just a hypersensitive CNS I guess. So, that makes my Neurologist, my Spinal PM and even my Urogynecologist all saying the same thing. So, I think she is right...that ongoing severe pain just caused some kind of central sensitization or "windup". It just never made sense to me to have small fiber PN come on all of a sudden and after surgery. The CPS makes much more sense due to the problems with the upper cervical spine levels.

re: tonic water...
 

Quinine is very bitter....very. It does not take much to flavor tonic water.

I believe one report I read was 20mg/6 oz. The typical RX dose for quinine for leg cramps is 260mg. So it would take about 86oz to get an Rx dose equivalent.

I do not believe quinine is of use. It is much better to pay attention to
calcium/magnesium and potassium.

But I'll tell you a surprise thing I did a few nights ago. My right great toe has been hurting alot, a sharp pain, and my foot in general burns alot. So I tried some hydrocortisone cream on it (I thought the skin was very dry under the toes)...and my HC has aloe in it...and guess what. Alot of the pain is gone.
I've only used it twice in a week! I am thinking some HC was absorbed?
I've had really burning feet all summer, more than usual. I will continue with this new development and let everyone know on a separate thread.

Thanks for the report. I think that is what they were trying to achieve when I was at the Cleveland Clinic day program for pain. I told them and how I feel that I think yoga,talking about your feelings about how the pain makes you feel not symptoms,biofeedback can assist but it comes to a point where it does not cut it. I wished that the clinic did that part cause I found the support and coping techniques nice but also after being on your feet and doing so much physical activity you also need assistance of meds. I said you guys get a head ache and take a med you don't write how you feel about it or stretch. So for me when I felt like I got shot in the legs from pain to write how I felt about it rather then getting relief was irritating. Now though I do work on certain ways of coping. Actually in therapy right now I'm working on mindfullness and relaxation skills. It does help me stay present. I think for myself the coping skills work better for the anxiety and depression around the pain but not so much for the actual pain itself if that makes sense. I need any help I can get though. Thanks Melody

I have taken Mrs D's advice and now take magnesium citrate in powder form every day for cramping and this has been a great help. I have suffered with severe foot, ankle, leg and hand cramps which my neuro feels is due to my PN. No one else has a better explanation for them. However when I get a very bad day of cramp and it looks as if it is going to keep me awake that night (probably walking around the bedroom on and off through the night) then I have with my doctor's approval, quinine bisulphate tablets on hand. I take just one 300mg tablet when the cramp is at its worst and it gives me about ten to twelve hours of considerable relief.

As for the quinine in tonic water - as Mrs D has indicated - forget it. You would need a crate full :eek:

Tony