good after you stop beating your head against the WALL?
The key is to suss out the 'system' learn the language and USE it all to your advantage. It's all coming as a rude awakening, but whether it's in the US or UK it's really all about using the words, saying the rite things, and 'playing the game' to YOUR best advantage. Keep pushing at those walls, here even, I'd had to get a second and third opinion before action that was necessary was taken, I think I set a diagnosis record in that it only took me 14 months from onset to diag. Most of that was before I was net conversant...I simply KNEW I had to PUSH PUSH and then Question/PUSH until I got answers. Keep in mind that some folks on these boards have had to endure for 3-10 years before a decent diagnosis! The thing that's hardest to do tho-is put it to your key docs that a-YOU HURT! Very much! b-you are scared beyond heck that it's getting worse in different areas and c-that 'you've read' stuff about.....x, y 'n z! and that all isn't reassuring at all. Do it HARD DRY & FACTUAL! post questions then about: aren't there tests that can at least eliminate M, N, & P? and gently ask, don't demand. Reason & Logic will or should get you to where you need to be? This way the doc gets it ...the connection on their own and you get your way in the end...It's never fast, it's not easy. I got lucky only by accident. I know that, and appreciate that as well.

David IS right tho, that here we are, from all over the world with the most peculiar of conditions, yet...it's like we are next door to each other? Like over the garden fence or something? I marvel at this each time I log on! Hey, I think that kind of says it all? - j

Thanks for all the encouragement and support. I am in a lot of pain today so it helps that I can come here.

I so agree Wing 42 the internet is indeed a marvellous thing to enable us to chat from the other side of the globe! The weather here is “quite nice for the time of year” as it is customary to say in UK!

Can I ask a question again (I asked in my post - my story and some questions) do any other people with PN get sharpe AND aching pains in their ankles around the shins and in legs and very aching knees, or is it just me mostly these come on as the day goes on? When I told my GP I had theses pains he raised his eyebrows at me and talked as if I should just have burning feet! BTW I have those as well although sometimes they are freezing cold (but not at the same time!)

It's unseasonably warm here under Santa Ana conditions, about 85 degrees F. and we've only had about 6 cm. of rain since last June! I imagine that "quite nice for the time of year" in the UK means gloomy and about 5 degrees C. with a medium breeze and alternating drizzle and mist.

I get shap pains, electric pains, aching pain, numb areas, burning, and weird intense pains that feel like a tiny carnivorous worm is chewing toe joints from deep within. All the pains are usually much less intense and less frequent than the first few years of getting PN, but some pain is usually still there.

As I sit and type this my toes are tingly, with a bit of ache and tightness from the knees down. But yesterday I almost fell over cooking dinner when that damnable carnivorous worm all of a sudden started eating the joint where the small toe meets the matatarsal head in my right foot. That only lasted for about 20 seconds, but it was a breath stopping excruciating moment. The good thing is that I had an excuse for the soup being too salty.

It's certainly frustrating talking to an arrogant and ignorant physician who is unaware of their ignorance, is closed to learning anything from their patients, doesn't hear what you say, doesn't believe what he or she hears, and invalidates your experience. I believe that there is a special large room in the second level of hell for those so-called doctors. In that room, those damned jerks will have intense PN pain, made worse by the heat. The imps in charge will have a fatherly demeanor, wear white physicians' coats and claim to be healers and caregivers. Poetically, the imps won't hear what those quacks say about their suffering, or won't believe what they hear, and will invalidate the suffering souls' PN experience. The imp "doctors" will prescribe totally inappropriate and ineffective cures, such as anxiety pills...for a thousand years.

David,
Your impression of a quack's hell certainly meets all my criteria

Lupin, seeing your health system is a bit " tricky " for want a better word, then its your GP i would be jumping on top of, don't let the GP talk over you and stand your ground, be stubborn and do what ever it takes to make him listen to you and don't move off the seat until you get the result you want.
I've found that GP's get nervous themselves if you go over their alloted times for a patient, you can use that time for your advantage and really make your case be HEARD, stand up to the GP and tell the GP why you need to see a Neuroligist that specializes in PN, you don't want a normal neuro as PN is a special field of Neurology and a normal neuro is not good enough, anxiety causing PN what an idiot, if a person has PN then has a lot of anxienty it can irritate the condition not the other way around.
If your GP doesn't know of any neuro's that specializes in PN then ask him/her to contact a large teaching hospitals Neuroligy department and ask them for their recommendation for his patient that has suspected Peripheral Neuropathy.
Its up to you, good luck.
Brian

well said David

Don't know if any of you have seen the film Brainstorm with Christopher Walken and Natalie Wood (her last feature), it was about 24 or so years ago.

The premise of the film was a device that records your thoughts, your feelings and EVERYTHING THAT IS GOING ON IN YOUR BODY!!!!

During the film, one of the doctors was having a heart attack (with all symtoms). The actress put the device on her head (she knew she was dying and she wanted to leave an imprint in the device so others would know exactly what she was going through as she died). I will never forget this.

So after she dies, and the other doctors see that she recorded her last moments, one of the doctors puts the device on his head so he can KNOW WHAT SHE WENT THROUGH DURING THE HEART ATTACK!!!! All of sudden, he gets a big pain down his arm (that happens during a heart attack to some people). He grabs his arm (like he is indeed having a heart attack), and he immediately takes the device off his head. He then says to someone: "I can by-pass the pain stimuli and just experience what she experienced as she died, I don't have to feel the pain".
So he does some fiddling with the device and he again puts it on his head and he then RE-LIVES THE OTHER PERSON'S LAST DYING MOMENTS, SEEING WHAT SHE WAS SEEING AS SHE DIED!!

Where am I heading with this???? Imagine a device that you put on as you are experiencing all your worst PN symptoms!

You then bring it to your neurologist, general practictioner, WHOEVER is your doctor. Instead of telling him about your pins and needles in your feet, the burning, the WHATEVER stuff that your PN is putting you through, instead of telling the doctor, you simply hand him this device, he puts it on his head and he FEELS EVERYTHING YOU ARE FEELING!!!

I bet you a million dollars, in two seconds flat, you'd have all the doctors going "Oh, so THAT IS PERIPHERAL NEUROPATHY!!! Oh boy, we better do something about this".

You see, they might nod their heads, and cluck cluck and go, "I know what you are going through". but they do not, and they never will, until they experience it for themselves.

Maybe someday in the future they might invent such a device. Now wouldn't that be something?????

lol
Melody (the sci-fi lady)

Melody,
at the risk of taking this thread off topic...I sure hope they invent this device some day. I've got a particular doc or two that I'm putting it on.

Lupin,
I'm sure sorry you are suffering this pain. I can sympathize first hand. I have this teeth rattling pain like you are describing and mine goes from the toes to the waist thru the sit down area. I'm just sorry anyone else has to suffer it. I do agree with the rest of the group, that you have to be your own advocate. It's your body.

Billye

Very good idea Melody , might come in handy to give our polititions a zap or two, to dig deep and hand out a lot more money for research as well

OOh, Brian, Politicians!!!

That's super, and while we are at it, pharmaceutical companies too!!!

Lupin, I hope better days are ahead for you.

Melody