Sorry to hear that your feeling so unwell. I have to mention that in Sydney I also had a very hard time finding a neurologist who understands PN. I was supposedly refered to the most experienced neuro and because I did not present with any motor defecit he was stumped and dropped me as his patient. My GP is very good, and though I feel that he still doesn't understand the magnitude of my condition, he at least does not deny that it is occuring.

I finally had to specifically ask to be refered to a small fibre neuro and that's how I found my current neuro.

I don't know how the NHS works in London,but I have a feeling it's similar to ours with the exception of not having to register with one GP. Maybe finding a more willing and sympathetic GP may help you cope with the illness better. The illness is hard enough but not having a GP willing to go that extra bit to help you and look at treatment options is harder.

Tony,
Do you have a current neuro? Is autonomic testing available to you in London?
I have dysautonomia, and I recently underwent autonomic testing again which would be the second time in 3 years and it has come back normal. I also had a holter monitor again and it has come back normal. I had pretty bad gastric problems and I thought my digestive system was totally shot for 2 and a half years and it turns out that it was totally manifested by the beta blocker I was on as a side-effect. I was switched Beta blockers and almost in an instant the digestive problems went away. I still have pain everywhere and my nerves feel totally shot at times,and sometimes I feel totally normal. I go through cycles. I have accepted alot but I am still seeking treatments.

I hope that you don't give u either, we have to be our own advocates.

Cycelops,

I just want to say your posts are very informative and very well thought out. I find myself really looking forward to hearing what you have to say. I am just sorry that you and Tony are suffering the way that you are.

To make a LONG story short I have had every test imaginable with the exception of a spinal tap and every test that my Neurologist, Rheumatologist and Heart doc has performed have always come back normal. I have said this before; my Neurologist changed the small fiber PN diagnosis to Central Pain Syndrome which my spinal PM is in full agreement with. Of course my main issues were and are spinal problems. And of course it does involve the brain, spinal cord, etc. "Pain in the Brain" or so they say...and a jacked up CNS. The thing is this can mimic PN so I agree there is such a diverse group but the pain is somewhat the same as in burning sensations or sensory sensations for me.

Name the med and I have pretty much tried it although not all. Neurontin and Lyrica does nothing and in actuality make me worse. I can't tolerate SSRI's either and anti-inflammatories of any kind will tear me up with the EXCEPTION of spinal injections. So, opiates it is for me and Hydrocodone at that. I take a very small amount although the script is written for one every 4-6 hours. I just don't do that unless I have to. Klonopin helps a great deal after it was found that Xanax was my miracle med. And I don't care if people think benzo's are gawdawful...they work for me and I have stayed at pretty much the same dose for 4 years now...not quite 1mg. So, that particular combo after 8 years of this stuff works for me. I won't say it obliterates pain but it keeps it managaeable enough that I am still functional. I have already been the route of med after med after med and I do NOT want to revisit that. That is when I was totally laid out and could barely move. My Neurologist is in agreement to keep the meds as low as I possibly can and manage it in other ways. Swimming or rather aqua therapy in a warm/hot pool has been wonderful. I also find distractions which may or may not help some people. I know it is beside the point but Genealogy is my hobby. I can find myself so absorbed in research that I don't find myself thinking of the pain.

Anyway, the bottom line is that I take Nexium, Vicodin and Klonopin. All 3 are very constipating and I should say the Gastritis and GERD that I have or have had were due to being on numerous meds in the PAST. I bring this up because I had a reason bout with a bad gastro bug...lasted a full month! What has helped was a new probiotioc called "Align". It is as if I don't really need to increase the fiber (there are reasons for increasing the fiber too...mainly pelvic floor dysfunction). But I swear by that stuff and I would have to eat yogurt all day long just to get the cultures that are in this. It was given to me by my Gastro doc and along with diet changes helps a great deal.

Ugh, I am rambling. I just wanted to point out the diversity as well. And I am not deficient in any vitamins. This whole central pain thing was probably caused by cervical myelopathy. But the result is the same...neuro pain. Just different processes. And I don't think I have Central Pain Syndrome as bad as some. But..it is there.

Thank you for pointing out that there all kinds and forms of PN and/or neuropathic pain. I just could NEVER wrap my mind around a diagnosis of idiopathic small fiber PN. Part of the problem is that my Neurologist didn't know my FULL history BEFORE I saw her for these sensory disturbances. And then when everything came back normal, there just had to be a reason for this. Thank goodness she changed the diagnosis. Because Central Pain Syndrome makes much more sense to me in regards to my own conditions. As my PM says all the time; pain does not just to decide to show up without good reason. And I believe it!

Thanks for this. I agree we are all different though we share the common bond of pain and the mental and physical aspects. What works for one may not for another and that is frustrating and why I think this is so hard to treat.
Tony I am sorry for your struggles and hope you have some good real time support to help you.

I'm P.M.ing you.

Billye

I really never expected this kind of outpouring, nor do I think you did?
Yes, we ARE a frustrated and hurting BUNCH! We each have often expressed one aspect or the other and never completely before. I do not know about anyone else here, but I'm finding it healthy and cathartic to feel free to try and talk about it all?
I for one have never really 'put-out' my own concerns/fears about the possibility of my PN/autoimmune confluence of events being possibly 'paraneoplastic'. [FUDGE! I am almost 2 years out of the big 'C' and am waiting for another shoe to drop!] It seems to have been something of an unsaid RULE in the past protocols to NOT speak of such things aloud as they might cause panic. Panic is not something that should ensue? More of an alert cautiousness/watchfullness about all those auxiliary issues that can and do bother, disable, and at times, decimate our minds, souls and spirits. Goodness knows that having a PN that compromises your ability to feel, get around and guarantees constant unremitting pain is enough to set off a persons' panic systems? Duh?
I honestly do not think that anyone here is comparing their own pain to that of others? I see it more as a sharing and outventing of our pains, our frustrations, and possibly our hopes as they are adapted due to our life's changes. Candor, honesty and understanding by all of us can help each of us help each other GET THRU THIS STUFF! AND all the 'other stuff' that seems to come with it all! All of this STUFF? is full of downright scarieness! I truly wish it were not so...we usually [before PN] looked to the medical professions to 'give us a pill, do surgery and 'make it better'' What we have is not that well understood nor treatable. I guess we each have to start 'advocating' on the grass roots level and strive, as best we can to work our way up the food chain. Even then it would probably take at least ten YEARS to achieve any reasonable funding, not to mention signs of progress if persuing research thru the Gov't food mill. [Used to work there? That's how long it takes to BEGIN a process!]
Tony? I know where you are coming from in many ways...silly tho this sounds? The thing that kept me going was that I really didn't want anyone going thru old papers or my 'drawers' drawer! No Kidding! I've still not completely done them clean! My heart, soul and mind truly know where you are at. I truly wish that you were not at such a dark place...rather a place of light.
Hugs to all and hope too! - j

Thanks to those who have PM'd me and I will reply just as soon as feel I can sit and type them!!!

In the meantime I am taking on board all your suggestions.

Tony

I am not sure how this thread got here, but I am giving Tony credit, and also you Dahlek, because, I was hoping it would get here, but, unlike Tony, was not able to able to put it into words as eloquently as Tony, or as bluntly as Dahlek.

I PM'd a member lately, on this very dicussion....and my thoughts are if you are dying while living, you have thinking to do, but if you are living while dying, you are holding your own.

As living creatures, we, all manage to live lifetimes with the Sword of Damocles hanging over our heads, and we live, fully in general, happily, looking forward to futures filled with dreams.

My best nursing experience was working on an experimental cancer unit...we got the most difficult cases in the region. None of them had a 'bright' prognosis, some came in and it was evident, there was little we could do, but give them a meaningful life while dying, and death was imminent. We focused on life review, preparing the family members for the separation, reassuring the patient that we would make it as 'easy' as possible. I was never uncomfortable speaking with my patients about these things, as it was so evident, and most of them, WANTED to speak about these issues. Of course, we gave them the opening, and it was up to them to follow thru. A few of our patients survived brutal chemo and treatments such as hyperthermia, and against the odds, were discharged. A good number never left the hospital....back then they let you stay in the hospital.

Anyway, I don't think too many of us are facing imminent death....our issues are more of, how far do you pursue 1. Getting a diagnosis, 2. Getting treatment, 3. Getting symptomatic treatment, 4. Getting palliative treatment, 5. Refusing treatment that could in the long run by refusal, result in death.

Dahlek, I know you deal with the potential for recurrance, and that doesn't ever go away. It gets further away as each day passes where no recurrance...you have dual issues. Cancer and neuropathy and you are knowledgeable enough to know that paraneoplastic syndromes can preceed cancer by up to 3, 5 or even 8 years from what is published. You could have two separate conditions, and ironically, the neuropathy you have, could be, the demonstration of an active (albiet misdirected) immune system, fighting off cancer. Thank God for IVIG, so the immune system can be modulated, in your case, rather than suppressed. No cancer patient confronts cancer without a great deal of thought about mortality.

Cancer is one of those diagnoses, that takes your breath away....you know you have to fight, and fight hard, and then hope you don't have to fight again....and hope you die of old age, maybe, to be humorous, choke while eating chocholate while in your late 90's or while having an interlude with the handsome or lovely (depending on your gender) 97 year old in the assited living complex.

I haven't had cancer yet, but my mom is a breast cancer survivor....so chances are....I will get to do that too....maybe not, my sister insists I got all my dad's genes....LOL, so she says she won't get neuro disease.. I don't know about that...I think it is 50/50.

Tony, so poignantly brought up, having to live with his disease without a diagnosis...that sounds ironic, but PN is a disease where a quarter of the people are offered no 'cure'. No steroids, no IVIG, nothing....just you have this condition. It is incurable, can be progressive, and painful and surprise...'we don't have a lot of good ways to handle the pain.'

At first, I was kind of perplexed as to why people in Britain and Australia and other developed countries have no autonomic centers and then I kicked into Stephen Hawking mode....The US has most of the Autonomic Centers because we had the most astronauts. Vanderbilt U, I believe, was the first one to develop the labratory needed to do the physiological testing needed for people who were going to survive in zero gravity. Because our economy thrives on competition (not always fair) we have the most centers.

Gravity has everything to do with the autonomic system, mostly because our bodies are designed to function against a given amount of gravity. The space race gave birth to the medical specialty of autonomic medicine....which was tied to the small fiber nerves in general.

Any one with abnormal autonomic testing needs further evaluation, for cardiac and neurological causes. You can have small fiber neuropathy and not have autonomic neuropathy....you can't have autonomic neuropathy and no have small fiber neuropathy.

Dysautonomia is a milder form of autonomic dysfunction and should yield abormal testing as in POTS, but may not yield the abnormalities clinically that PN does.

Why the skin biopsies for nerve fiber densities have not been offered to people worldwide is beyond me. I know there is new technology on the horizon, but, still people should be offered this option. If the nerve biopsy is abnormal, autonomic testing should be done. Then LizaJane has pretty well summed up the search for a cause. The spread sheets are pretty comprehensive.

Autoimmune, sarcoidosis, amyloidosis, acute intermittent porphyria, Lyme disease, Celiac etc.

One newer poster mentioned that Athena Labs now has 33 gene loci for CMT which is a hereditary neuropathy. Many more loci are expected to be found. Genetic testing in idiopathic cases can be considered.

There are many hereditary myopathies with some small fiber involvement, and the uncommon ones, need to be biopsied for, and this is pretty high tech molecular science. The degree of suspicion has to be quite high to justify this.

What genetic testing gets you if you are 'lucky' is a gene loci and diagnosis, of which in general is still incurable...however, you do get a more predictable prognosis.

There gets to be an end to the internet. I didn't think there was, but there is! You can get to where there is no reasonable explanation yet known to man OR it is in your genes. Either way, there is no cure, and if it is progressive, and you know when it is progressive, despite what any one tells you...you have a limited options.

When as Tony said, you are bringing up diagnoses to your doc, it is a sad state of affairs....when you are the one who finds your own AN, because no one has put the pieces of the puzzle together it is more than frustrating.

I think docs are trained to focus so much on the tree, they miss the forest.

We are parts of a whole, and there is no treating a part without treating the whole....at least not in neurology. A big part of that whole is that we need to deal with mortality, and something just as frightening, dependency.

I don't think dying scares me as much as being dependent on others, as a matter of fact, after getting extricated from a car stuck under a truck with a payload of propane cylinders 20 some years ago....I became less afraid of death than of being dependent.

I know exactly what Tony is speaking of....I will keep plugging on, until plugging on is ALL I am doing....when that is my only preoccupation, staying alive, to the neglect of all other things, then forget it....that is not giving up, that is being reasonable in my book of rules....that is my decision. When my disease adjusted dreams, are clearly not adjustable to any lesser extent, or modifiable to my satisfaction, and I can't find a good reason to get out of bed and face big pain and major bodily dysfunction...well, that is life not worth living...and I would decline intervention to prolong life.

If they can't control my pain and I can't eat normally, poop without major procedures, or stand up for very long without passing out...well, I will have my mind made up.

That said, I am not there yet....

there are a lot of interventions that can make life not just liveable, but allow it to still be pleasurable, and I intend to advocate for myself to get those interventions, as much as I intend to put in efforts to stay well, such as nutrition, exercise, mental exercise, social support, intellectual stimulation and spiritual pursuit.....some days, that begins with deciding which is the best way to get out of bed.

I do think that science will improve over time, but access may not. I also think about that.

I think being able to bring up these issues is very important...without being chastised for giving up, for being preoccupied with dying, or scared of dying because the concept is discussed.

I think quality of life is a huge issue for discussion. I do think people with chronic disease can have a quality life, but it takes a lot of effort and it depends on the chronic disease and extent of it, and how long we have endured it.

PN is lumped in with the neruomuscular diseases, some of which are terminal in infancy, to others which don't manifest until late adulthood. Life issues are seldom addressed in 'just' PN....they are more likely discussed in MS, ALS, MSA or other neuromuscular forums, many of which have PN as a component...there are those of us, stuck in the not definitively diagnosed limbos, especially with AN, that do have to confront issues of systemic failure.

I have had a few years to think things thru, feel OK, not thrilled, about most of my quality of life issues in general, (on most days) except for better pain control....that said, I may be facing a surgery to 'fix' a neuro problem (altho it is not a hugely major issue)...that starts a slippery slope....and how far down that slippery slope I want to go is, ultimately up to me....and I think that is what Tony so bravely brought up.

I think it is important that we keep each other informed on research developments in the many aspects of PN, and that is a lot of aspects. PN is a component of many diseases....that we cover all of our human facets, that we reinforce our individual rights to choices for ourselves, trusting that we as adults can take information and use it to our own good, even if we disagree, and that we support members making difficult choices in difficult times.

Presenting options and research without making judgments, because few of us really know what each individual with PN and other chronic illnesses that may visit this forum, is facing or has faced.

This thread has exceeded my expectations for honesty, compassion, communication and bonding...thanks to all of you.

"I do think that science will improve over time, but access may not. I also think about that."

"I think it is important that we keep each other informed on research developments in the many aspects of PN, and that is a lot of aspects. PN is a component of many diseases....that we cover all of our human facets, that we reinforce our individual rights to choices for ourselves, trusting that we as adults can take information and use it to our own good, even if we disagree, and that we support members making difficult choices in difficult times."


This, from cycleops last post, is, I think, the crux of the matter. To badly quote a certain conspiracy oriented past TV shoe, the truth is out there. There are reasons and etiologies for these syndromes, although many of them are still unknown. As we continue research into human biology--especially the genome--many of these mysteries will be solved. But the real problem will be what kind of effective diagnostic screening and therapy will come from this research, how such knowledge will be used, and whether those afflicted by such conditions will actually have access to screening/therapy.

Far too many of us already have stories to tell of investigations into unusual conditons suspended far too early for reasons of lazy medical professionals, lack of insurance coverage, no access to distant facilities. Boards such as this one help somewhat, but can't always help someone get a better doc with a more inquiring mind, or better coverage, or a trip to Hopkins or Columbia/Cornell or the Cleveland Clinic or Mayo. And, internet access, though spreading, is far from universal--how many people are out there, I wonder, who do not have this access, who have never heard of these conditions, who don't even know what questions CAN be asked.

This is why I urge all of us, to the best of our energies and abilities, to advocate and write and cajole and needle for a health system that is not so dependent on the individual to pay, that is not so determined by one's employment status or that of one's family, that is not so stratified by geography or ability to self-advocate.

I guess i should PM your,but I want you to know how very kind you are,
I have had PN I don't even count anymore..This weekend I am by my
self from family,and friends..Why I'm bit tired of trying to always being the
i'm fine women,well so many of us are not,really not at all..

Sometimes it's fine to say I hurt, I'm wore out,and ask for only pain care.
I was told 4 years ago, by mayo and a kind local Neouro pain management
was the best idea..Don't get me wrong Tony it's up to us in the long run.
I've done what i'm been told, are you on good pain meds,because I could
PM that but i'm sure C already has.

Please keep in touch,because you are family,the gentle kind, and blasted
the handsome one..Where is our Yorkie mom she is the sweet one who
would lend you a shoulder..I think I will feel better without some meds.
that make me crabby,i'm charming despite what some think ha ha .I
would not like to be told cherry pits will cure me, although it might be
interesting to see how fat my neck can get..this is a poor attempt at a
joke,please be nice..C and the rest understand..Send us a post Tony
on a good day,I;ve had my share of anger,no more (I Hope} Your friend
or batty Aunt Sue...PS Tony you can not be 74,

In Mo.there are more then 70 counties under water in 1993 I was out packing
sand bags,I see some of the older farmers on TV one very big elerdy man
in his 80's crying because he had just put in the first wheat,the news
people said will do this again,his son holding him up,this was for my children,
but no more.My son was just crossing the New Jeff City bridge in his old
van,the back of it almost fell in,they had the film of that on,cnn all the
all the stations today and yesterday,it was to much.I wonder if they,
our well anybody will help this time..Wish I could help with those sand bags.
This was in 93 but seems like yesterday..
















i

Sue, Missouri gets the prize for the most miserable winter....we come in second with the deepest ever recorded snow fall....and it isn't over yet...dagnabit. We could double my height in inches quite soon!

Unfortunately our snow becomes Missouri's river water....our nearby banks are overflowing...if we don't get rain, this should melt down slowly....we still have a good 4 weeks of potential for heavy snows....which brings to mind my sanity for staying here...well, you know, you have lived 'up' here. Even if hubby could retire, there is no housing moving. Please advise your adventurous family to stay off flooded road...'turn around, don't drown!" What a mortifying experience! I would have not been very happy.

I am going to lighten the mood here, because I just can't resist...

I don't think handsome Tony looks 74 either....but you know what...I swear the worse your PN makes you feel, the better looking you get! I think we call that a paradoxical reaction???

We are probably collectively the best looking bunch of sick people you'd ever see.

If one more person tells me I look good, I just might burp up on them. So Tony may be less than thrilled with our compliments. Tony, at least you know we can relate!! Please bear with our humor....you know, we use it to survive.

As part of my healing regimen today, I downed a Cadbury Egg, (maybe there was protein in there somewhere, afterall, it IS called an egg) and a few peeps...(not the chatroom, text messaging kind, oh no, not those kind)...I had the pink bunnies and yellow chicks. Yes, I know all about how bad that stuff is for me....I passed up the marshmallow bunny...but you know... Tradition!!

(I still have a chocolate bunny named Cottontail...it just feels wrong to eat something with a name, but, he is in my drawer and hopefully my dog doesn't get him first...the two boy dogs shared my viactiv last month, and the loose doggy doo with silvery wrapping, that resulted. (Thank goodness I have a few acres). Maybe if I ate Viactive with wrappers on, it would function like that for me) Well, this time they are not getting Cottontail! This is one wabbit I intend to eat....at some later date. So far, everything is tucked nicely in my pouch 6-8 inches below my mouth...eventually it will slink down further, along with the crushed meds.

This was a three in one week...St. Patty's, Spring Equinox and Easter....something for every one!

I am gonna win that HGTV Green Home (I figure my luck has to change at some point)...and all of you are invited for the weekend....all us good lookin' folks can party.