Hello Megan;

My 'Idiopathic Sensory Polyneuropathy Syndrome' is chronic and took quite a long time to be bad enough to alarm me enough to go to a doctor. I've been in testing, diagnosis and "best treatments" mode for the past 5 years, the worst year being the 2nd one after diagnosis.

Just wanted to say that Liza Jane is so right about moving our limbs and excercising, as much as one can handle. Morning is terrible for me until I get up and get moving around.

Take care,
Nancy

Neuropathies:
1- Almost every statement about any type of neuropathy indicates "USUALLY", not ALWAYS.
Then,
2- Neuropathies mimic so many other conditions that nothing can easily be excluded in diagnosis. Ideopathic simply means that some other stuff/issues can affect what's going on. Autoimmune conditions/diseases; strokes or vascular issues; endocrine problems; nutritional deficiencies; allergeies; and about a ten dozen other illnesses can eigher overlap or affect the current 'round' of neuropathies.

So, it is not cast in stone that it HAS to start in the feet. However, WITH neuropathies the first thing to do is get tested and treated ASAP for the pain during testing and beyond...Treatments may change after tests results, but treatment is the most important thing to do/get first. Diagnosis is usually one done in hindsight, tho you mite have to move mountains to get one that's in the ball park.

Hang in there. 's - j

Realistically Dahlek how am I going to get a diagnosis without a Neuro? I have an appointment lined up with another Neuro (with more of a PN interest) for December 10th.

I am planning next month when I see my Endocrinologist to get him to order a GTT, but in the meantime I haven't got a clue what to do. Do I just sit on my GP's doorstep every second day - to what avail? I do need to go back to see the GP this Friday to get the results of the extra B12 results and some other things he did - so maybe I can go through some stuff with him then ... but PN is NOT his specialty and I can't expect him to make a diagnosis of the specific type of PN I have.

Someone (it may have been Rina) posted a link yesterday to:
http://www.hopkinsneuro.org/disease....ory_Neuropathy and so much of that seems to be 'me'. However what I don't know is whether prediabetes is even a remote possibility because my random glucose levels were perfect....if it is not, then all that can be done is appropriate medication to help with some of the burning.

The burning is getting me down, but then I have to ask is it bad enough to expose myself to medication that has side effects and may mess with other medications that I take. From what I've read the medications don't help with the prognosis anyway - ie. doesn't make the underlying condition go away.

At least these past few days some of the extreme fatigue has lifted and the nausea/epigastric discomfort have eased after eight weeks....which has given me somewhat of a brighter outlook ...except for the burning which is relentless.

I truely do not know what my next step should be, since that idiotic Neuro bunked me last week.

First thing you have to do is relax. I know that in the first year of my PN (which is still - idiopatic) I was running to see and be checked by many neurologists here, some of them PN expert and they didn't know what to say. I did a lot of blood tests to eliminate some other background illness - and everything came out - normal - which is good. If you are thinking that it might be a prediabetic - keep your diet to prevent the real diabetic stat - you can tolerat it by eating properly. There is a book "Ultraprevention" by Mark Hyman and Mark Liponis. To my opinion - it is a good book with good ideas. And about the pain and burning - our brain has to "learn" the new situation and after a while - you will feel it less and less. I have to look for the article explaining this and I'll add it later.
Rest, eat properly and don't be panic, do exercizes, breath clean air as much as possible. Read what David wrote a while ago (Wing 42) and hope that one day - you will recover completely. Good thoughts bring good conditions.
(I sorry my English is not good enough to express myself properly...)

Hi Megan, my burning has been all but eliminated by use of interferential therapy machine( a type of tens) and by taking B1. Just the regular B1 not the benfotomaine. The interferential machine i use in a divided foot bath with epsom salts in it. They are not expensive machines...less than 200.

Although the pain may have been virtually eliminated with the 'inferential therapy machine' does this actually halt the nerve destruction or does the nerve destruction continue but is masked?

Thats a tough question, i think it would depend upon cause and how soon you are able to address it and could vary from person to person. IN my case i havent gotten any better as far as numbness and balance, if anything im more numb, but the areas involved have not spread in two years. Was that due to exercize, supplements, interferential therapy, tens, or just how the disease progressed i dont really know. I do know that the burning and throbbing pains have greatly lessened and it was as i was being treated by interferential therapy and taking B1.

It can and has happened, but not often...
For examples: GP's familiar with diabetes, carpal tunnel or stroke patients are at times more 'attuned' to look out for such PN issues and either have 'learned about' and treated or refer patients to available area specialists-IF there are any. It really depends on that doc's particular past experiences. As for getting in to see that new neuro? Call that office and ask to be put on a wait list for cancellations. That's how I've lucked into many of the appointments I've had with some of the BEST in a 25 mile radius of my humble suburban home? You just have to be 'ready' to get there with anywhere from 3 days to 12 hours notice? You can always decline [say you have a conflicting appointment] and ask to be 'kept on the list'. It's worked for me, and definitely worth the effort.
Of course you show a good deal of common sense in realizing your GP can't do all he might/should to help your situation, but Keep enlisting his 'curiousity' by asking some of those 'silly questions' we all ask here... But, never EVER say you learned it on the INTERNET? So many docs resent this? And while you have found a site here of folks who are dedicated to [as is said on the "X-Files"] learning as much TRUTH as can be known about PN's, well lots of docs think it's all quackery. I simply say, I've read/learned about from sites such as: NIH, Cleveland Clinic, Hopkins, Mayo, Pub Med., etc..read papers about.X,Y &Z...So you are asking questions based on pedigreed medical papers and research. Your questions can't be brushed off as easily?
Just HAVING your GP in your corner, knowing that something is going on and it's beyond his circles of knowledge and willing to back you up with say a referral to say Mayo, Hopkins, or wherever - making a 'call' to get you on a short list for a full diagnostic workup could be just the boost you need to get tested...
Take every good action as a prize, any set backs as just that and as Rina said- relax=CHILL! Expect the worst, hope for the best and if anything good happens be happy that you are one step more on the way!
It IS one heck of a long and frustrating process! Read carefully LizaJane's Billye's and Kmeb's posts as those are lessons in persistence, frustrations and more perseverance! They are pure lessons in the NOT GIVING UP FACTOR! There are many, many others here who have inspired me to keep on going and learning and coping...Even newer folks! We aren't done in yet! Nor will we be! So, keep in mind my favorite fortune cookie? Patience is the Art of Hoping Takes a big heap of Patience and a whole mess of Hope?
Will start another thread about the meds... - j

This IS and will always be a complicated issue. How many times have you been waiting in ANY doc's waiting room and finding the 'suited' reps with their wheelie-totes just sailing in? DUH?
What I've done about my meds and the s/e's has been to read, list -laboriously by hand or 'puter the myriad of known common, less common and rare s/e's for each med...Then I cross referenced them and found that I could of my 5 primary meds have had anywhere from 3-8 potential cross-over effects.
Then I took a good look at 'cautions' regarding other medications to be taken or not, with that particular med...I found lots of 'cautions'...
Next the Hard part? Requiring lots of patience/persistence and time. Call those 800 #'s for each drug MFR and plan on spending at least 15-45 minutes for each call...they will ask you your history, meds you're on, for how long, dosages etc. Best to be as honest as you feel comfy with. I have found a LOT of useful info by calling these MFRS and it's stuff not put out in research nor public. Be quick, accurate and sure in making notes tho -as info can come at you soo fast if you don't make notes and recap back at them...well when you hang up you do go DUH? Also, some meds affect for the good and bad your blood test #'s -so be sure to ask about that.
Lastly put it all together IF you can and then call the FDA about the meds you are on if there are any potential negative s/e's..WHY? because the MFR's don't necessarily report all you have 'reported'! You have to be sure that your concerns, issues and side effects about meds or med combos count! It's kind of like voting but for all of us FAR MORE important for us and for others. It's not a scary process, just a time consuming one and one I know helps, because of my own reporting [vote] and that of others has changed the notings of s/e's a great deal on those 'prescribing information' sheets! Now, if only we could get the docs to read them?
Have and keep faith, help and hope is out there? You just have to find the rite docs, meds and resources for YOU. I know you will - j