Hello!

Yep, although new here, I've been struggling with IPN since 1999. I was hospitalized with lung embolisms in 1999. They sent me to intensive care and outfitted me with compression stockings up to my hips because they figured (but hadn't actually found it) that they came from a thrombosis somewhere in one of my legs. The second day I was there I noticed that I had lost all feeling in both feet. They said that happens sometimes, but usually clears up quickly.

HA!

It was so bad, that I'd lose my balance while just standing - very embarrassing because I'd just gotten a new job as conductor of the local anti-alcohol league's brass band and I'd just tip over in the middle of rehearsal.

In order to prevent further thrombosis, we (finally) got a family dog, so I'd get up off my butt and get some exercise. That was ok, but we figured we should also train the dog, so we signed up for courses, one of which being nose-work which was carried out in cow pastures. But I couldn't do it, because I couldn't feel the lumps in the ground and kept turning my ankles.

Through a series of coincidences, we ran across a great chinese acupuncture therapist. I went through 3 blocks of 15 2 hours sessions. In the middle of the 2nd block, one day I was sitting in my IT office and suddenly said to my office bud "Hey, I can feel my feet in my shoes!" Of course he looked at me like I'd just said I'd seen Batman. Anyway, I'd regained enough feeling to participate in hikes, and stuff.

But about years ago, things started changing. I started to get more of the uncomfortable symptoms: over sensitivity although the feet were still numb. Twitching, cold, burning sensations in the toes, cramping (toes, but also full foot), the feeling of the feet being bound. I also experienced growing fatigue, but I attributed that to having to work my way through dealing with the constant pain and still work. I can only wear certain shoes, but there doesn't sem to be any consistency as to what kind. either they work or they don't, which is a REAL PITA, because I wear US size 16 (European size 52).

I'd been to a neurologist who did several different manual tsts, but no specific blood work. Once a year for three years. He pooh-poohed the reports of acupuncture having helped (voodoo is what he called it).

I started a new round of acupuncture in July and have had some success, but also some set-backs - nothing stable. A new therapist who is also an MD. this time 50% normal acupuncture and 50% with electricity - funny, because as a dog trainer and behavior consultant, I'm strictly against using shock as a training device. Now I REALLY know why.

Anyway, while my INP has changed, it's only been partially better. In fact, I'd say more different than better. If I can't get better control over the pain, I'll probably have to quit doing dog training, because it's just too painful to be on my feet for 3-5 hours at a time.

I'm going to try to get our family doctor to refer me to a better neurologist and/or the pain clinic here in Basle, Switzerland. And am going to lurk here to see if I can make myself really intolerable to both my family doctor and this neurologist with my questions "What do you think about the XYZ procedure....?"

greetings from Swtzerland

Buzz Cecil
and my present dog and dog dance partner Vela
**

Switzerland! Wow!

Welcome aboard! Thanks for your introduction.
You'll find NT to be a wonderful place of support, care, and understanding.
Make yourself right at home. Feel free to browse thru the forums and post wherever you may feel inclined.

There's a friendly 'face' around every corner

It's great to have you!

Rae

HI there. My name is Melody.Welcome

IPN stands for Idiopathic Peripheral Neuropathy, right?

My husband has had this for over 20 years.

They did no blood work on you at all? I wonder why.

My husband did acupuncture around 11 years ago. It worked wonders for a while then it did not work at all.

Ah, what can I say. Hey, I'm communicating with someone in Switzerland. How cool is that!!

Take care and hoping for better days ahead for you.

Melody

Buzz Cecil,

It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place.

Please keep us up to date on your situation. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Hi Melody!

In German it's Idiopatische Polyneuropathie. At the time it started, they were more worried about me checking out from the lung embolisms. Later, I was just sent to a neurologist who did some tests (tuning fork, reflex hammer, electro-sensors) to determine the extent of the "damage" and to chart it. He must have seen something in the report, either from my family doctor or the hospital, that clued him in to the IPN, so I guess he didn't figure there was anything to test for, since the diagnosis had been made, especially the "idiopathic" part.

After 2 weeks of hell I changed shoes once again, to a pair I'd stopped wearing months ago. Actually these had been my favorites for a couple of years and then the kind of "stopped working" and went the other direction. Yesterday was a semi-acceptable day. The shoes I had been wearing successfully for the last 8 months suddenly really went off the deep end on Saturday - agony and that for 6 hours with no relief.

Anyway, I'll be keeping an eye on it and will pressure my family doctor, who is new because my last one retired, to refer me to a neurologist who knows something about IPN. My daughter is a new MD resident ow did part of her internship in a neurology hospital in Bern and she told me, that IPN is almost as frustrating for the doctors, as they know it's a miserable condition, but there are simply so many factors and so many different things to try/disappoint.

I actually feel more sorry for my wife than I do for myself. She just retired 6 months ago and we were planning interesting stuff for our joint retirement when I retire in a year because it appeared to have leveled off, but with this last year, all these plans are on hold and she, being the good sport she is, tries to tailor her activities to what I can do. We've never been stuck to each other like glue, each having his/her own interests and understanding that we don't have to share EVERYTHING, but when we actually do take 2 weeks together and I abrely manage a 90 minute walk in the forest, where she'd be happy with 5-6 hours, I feel sorry for her.