Hello all, I'm new to the forum and need some opinions of other PN'ers...

I am on the hunt down for a name to my situation..I've been trying for years but really concertedly for the past two years. Here is a quicky recap and I'll include all the things I've compiled and recalled even though they may not apply to PN just so you get the whole picture:

**trying to be brief, I swear**

Today picture
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- Regular episodes (almost daily) of burning scorching feet (especially felt on soles)/cold feet (whole foot, goes a little up the leg). They don't particularly come on one after another but it does happen sometimes. I've looked up Raynaud's via google and the images look way severe--My feet neither get that red nor that white.
- Resist wearing anything but flip flops or sandals as my feet tend to swell and feel claustrophobic
- Almost 24/7 leg pain that is typically hard to describe, usually anywhere from the knee down including the foot in a radiating fashion but sometimes in the thighs too
- Sometimes the pain will be in my hands (like I was wringing them for hours)
- Feet and hand muscles sometimes get so sore like I walked alot or something
- Leg pain is 95% of the time bilateral (same with hot/cold feet)
- Was treated (erroneously it turns out) for RLS by a neuro for 2 years
- Low back MRI showed bulging disc with no impingement on cord
- EMG/NCS 'normal'
- All bloodwork considered normal
- High triglycerides
- Night sweats
- Fatigue
- Diagnosed with Delayed Sleep Phase Syndrome (which definitely contributes to the fatigue I'm sure, but I've been a night owl my whole life and up until about a year ago I could still gear up to go to work on a Friday morning all dolled up for Friday night cocktails and good times...not true anymore)
- Tried many SSRI/SSNI's but they didn't seem to affect the pain although the attempts were before the pain was almost constant

History
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- Childhood 'growing pains' (would ask step-dad to 'rub the pain out') a few times a month starting as early as 12 but a copy of my medical file reveals I mentioned my ankles hurting at age 5
- Hot feet in teens..not frequently but I remember turning around in bed so that I could put my feet against the cold wall for relief
- Had ITP at 5, it just went away on its own
- Allergies/asthma <--- both much worse when I was younger
- Family history of: PKD, pernicious anemia, arthritis, high blood pressure


So, over 2 months ago I took leave from work, where I've been for 12 years, because I just couldn't do it. Either too tired or too in pain or both. Concentration shot. So irritable! Couldn't get to work on time, couldn't deal with being there 8 hours, no life outside of work...

Work has been very obstinant about short term disability...after all the ppwk in from 2 Dr's they still didn't approve until 2 and 1/2 months later [Apprved to end of March last week. Told me it was 'good faith' as there didn't appear to be anything in file to support why whatever I was being treated for for past two years had progressed to being 'disabled'.] Egad...I want to work, I *like* my job. Bunch 'o jerks!

I'm seeing a rhuematologist on Monday because I want to rule out lupus, CFS, Fibro, etc...or rule them in. I'd prefer to have nothing wrong with me of course but at this point, I just want something, a label, a name...other than just plain old I'm tired and in pain. But, I also know that PN can go with Fibro, Lupus, so who knows.

My neuro kept horrendous charts/notes. She indicated that she did the safety pin test on the first visit...not true, only the last one last month at the end of the appt where I couldn't answer her question on if it felt the same as she moved up my foot/leg because I said, 'I feel it but is it supposed to feel different? It is less sharp toward the feet'. Basically she said, 'Well, the NCS was normal'.

Seriously, if I can find out about temp and sensation diffs and small fiber neuropathy in 10 minutes on the internet..why is she not all helping me in the right direction?

So, sound like a PN to you?

Has anyone suggested this? Given the history of discomfort since childhood, it would seem a real possibility for you.

..treated for RLS for 2 years. Requip did nothing, don't really have the fidgets and urge to move. Just pain and hot feet.

--but it sounds like you need a thorough, targeted work-up.

Have you seen the Liza Jane speadsheets yet, at www.lizajane.org? Many ofus use this as a comprehensive guide to neural problem testing, and it also serves to track test results over time, to notice any patterns.

Can you tell us what kind of testing you have had to this point (nerve conduction studies, electromyography, blood/urine, manual testing, any biopsies)?

Hi Hurty well that part about rls sounds interesting i have heard more people mention this before you get to the pn including myself,my mom and one of my aunts...I would think a new neuro dr. might help,not that i'm big on dr. shopping..As the other PNers will tell you tests,tests are so important and you will have to ask for copies of all,make sure if your Dr. he or she has a good reason for repeting a test,sometimes they don't know they done it in the first place,shame shame but just put out records and point..LJ record keeping is the very best i've seen...I am a retired er truma nurse,there have been more than i care to count,no dr. you just did that STOP!!!
If your Neuro dr. seems more cofused then you ask for all records and run..But could you give some more imformation did he only do the pin test so on... sorry for this mess but it's a bad day and my computer finger hurts It's not easy to find out if you have pn and if you do you may not want it!!!But first the hard part is get a Dr. who is thorough and your job is to make sure he or she is paying attention to you. Many blessings Sue Polyneuropathies

I've had a lumbar MRI, EMG and NCS...all reported to be normal. The copies of the EMG and NCS weren't in the file at that time I got the copy. I had a sleep study 2 years ago that showed a big delay to sleep onset, no apnea, some leg movements and 45 awakenings that there was no specific reason for. I also am severely REM deprived.

Previous tests with GP show negative RF, Pos ANA with 1:40 titre, Low Vit D (taking supplements), B12 is 227, Ferritin is in the 50's..nothing else really stood out and I've poured over these blood tests and googled everything I didn't understand. Is Folate separate from B12? I don't think that was tested. In 1998 I was tested for the ANA sub test thingies (anti something or other) and they were negative.

I understand that there are other neuro tests for temp and vibration--she didn't do any of these.

I also did get a copy of my records from the original neuro (to take with me to the sleep specialist)...talk about bad charting. She got my name wrong and the company I work for in her letters to my GP. Looked like a typewriter from olden times was used. She couldn't look at the form I had to fill out on the initial visit that had this information?!

That's how I knew about her reporting of the pin test on the original visit. I've already identified a potential other neuro that I'd like to go to but since the original one did the short term paperwork for work I can't just not go back. I mean, I could but I don't think it would look good. I plan to go to her, ask her specialty, question her on experience with PN and then ask if she thinks I should be seeing someone else (of course, whom I've already identified).

She said at last visit (in Feb), "I think you need a sleep specialist because I don't think it is RLS" and then referred me and wasn't going to make a follow up appt. I said, "Don't you think my work will think its odd that I don't have a follow up with you?" So she then made one for July!

The sleep specialists were great in retrospect but only want to deal with the sleep issue and not the leg pain and sensations so they said you need to go back to her for suspected neuropathy. I called her office two weeks ago and the earliest she could take me was 4/30.

I think some of my frustrations lie in that if she was attempting to totally pass me off to someone else, she wasn't explicit enough.

I feel like (in the absence of other diagnoses) all of my symptoms could be related to one syndrome like Fibro or lupus and yet I feel like the Drs want to compartmentalize the symptoms and treat separately. This obviously isn't getting me anywhere yet.

I have the rheumy appt on Mon and then I also have a renal ultrasound on Wed as I have history of kidney disease on my father's side. I suggested these to my GP and she agreed when I saw her last week. But, she also wanted me to go to a pain clinic b/c she thought I might have a pain syndrome. My Heath Ins doesn't cover these Docs and I'm not willing to give up and follow a path that there is no other course of action until I get final weigh in from the rheumy and possibly a neuro that is knowledgeable in PN.

Like everyone else here I'm sure, I'd prefer to be completely healthy but if that isn't the case, I at least want a syndrome/disease path identified so that I can attempt to be treated so I can get back to my life! I miss my life. I like my life.

I have tried neurontin, amitryptilene, cymbalta, etc...I was either a zombie or there was no impact on the pain. Currently only on vicodin (approx 3/day) which isn't cutting it but is better than nothing.

One is the positive ANA titer, even if the sub-types show up negative--this could be an indication, as I'm sure you know, of a vasculitic/connective tissue autoimmune condition, and neural symptoms often result from these, from both vasculitic and compressive effects.

The second is that B12 level--it's nowhere near high enough, and could explain a lot of those symptoms. In the US we seem to have the "normal" ranges for B12 set around 200; in Japan and many parts of Europe it is 550. There are many reports of neural symptoms of B12 deficiency with serum values in the 200's--500's, and even higher; even moderate serum levels are not an indication of sufficient B12 at the cellular level. At the levels you report, it's almost certain you don't have a lot at the cellular level. (Rose/Mrs. D/others can explain better than I the other testing--MMA/homocysteine-- that can help identify true B12 deficiency.)

Kidney problems can result in neuropathy due to build-up of toxins, but this usually doesn't occur until there is a considerable degree of failure.

I suspect that you may find you have some sort of autoimmunity going on. You should be titred up for a number of antibodies--to thyroid, to intrinsic factor (anti-parietal--the B12 connection), and you may want to have some of the panels for nerve-cell specific antibodies.

Take a look at:

http://www.neuro.wustl.edu/neuromusc...oantibody.html

http://www.neuro.wustl.edu/neuromusc...nd.htm#thyroid

http://www.neuro.wustl.edu/neuromusc...itamin.htm#B12

Hi, your b12 is terribly low & that alone would explain tiredness.
I would suggest that get some good quality multi B & B12 Methylcobalamin supplements, 1-5 mg daily but taken at a differant time than the multi B as they work better that way, eg - say if you take the multi B at breakfast time and then take the B12 lunch time or something similar to that, they both need each other to work better.
I also suggest you have a good look at http://roseannster.googlepages.com/home.
good luck
Brian

I'm sorry fell alseep for real,anyhow just read you tests,boy you had them and seems like been passed around a little..Just read some of the good advice you were given,please you really came to a good place,and i know your feeling very frustrated,don't blame you..Ok how long were you on Neurontin and the other 2 do you remember the amounts???Brian do you think neurotin has any effects on b-12 or any b vits..or has anyone buillt up a tolerance to high levels 3600 of the neurotin that is.. Sorry Hurty that was rude..When i did my first sleep test,got to nervous,did it over had leg movements and got put on sleep apnea machine set at 10,it helped alot with my sleeping problem...Then i lost 80 lbs. and got taken off of it..Please keep coming back it can alot of the time save your google hand.. Sue

I think you should have your thryoid tested for Hashimotos antibodies. Some things sound very familiar to me like in the autoimmune family

Sorry I would write more but my TOS is kicking in today.

Best of luck