Idiopathic Polyneuropathy: My endless journey to a near-diagnosis …

Well I recommend that you have the EMG repeated. My husband EMG on the first neurologist said he had bilateral carpal tunnel. Had surgery on one side and it did absolutely nothing to help. Next neurologist repeated the EMG and sure enough CIDP. His neuropathy was so bad in legs and arms. He had several falls and some fractured bones.Don’t give up. He receives IVIG infusion therapy every 3 months.

Hello, Doug (@mayodoug)
Is Gabapentin primarily, or maybe even exclusively, for pain? Since I've no pain (yet), that may be why my doctors have not mentioned it.
Ray (@ray666)

Hello, Conrad (@earlt)
It sounds as though you and I have undergone the same battery of tests. I find it curious, though, that you, too, have swollen feet. I've had similar experiences: doctors examining me for something entirely unrelated to my feet have often asked, in an offhand way, "Have you any idea why your feet are swollen?" Mine, too, swell and then un-swell, depending upon what I've been doing or what sort of shoes I have been wearing. To date, however, no doctor has linked my swollen feet to my neuropathy.
Ray (@ray666)

Hello, @jemock
I am so sorry to hear what a tough go you have been having in finding some relief. Was it as bad in the first few years as it is today, or has your pain been getting steadily worse each year? You may not feel like talking about this, and if so, I certainly understand. Although I have been having some difficulties for a number of years, it has only been in the last few years that I have been trying to learn as much as I can about my neuropathy. Takes care. I wish you better days!
Ray (@ray666)

Hello, Rob (@rob39)
I see how you too have been dealing with pain. It seems many others here too have been trying to cope with varying degrees of pain. That may explain the various medications that have been mentioned. Since I have yet to experience pain –– only numbness, and even that my numbness is far from 100% (it took the EMG test to even convince me I had numbness) –– that may be why my neurologist has this far only I advise that I take alpha lipoic acid (R-lipoic acid) and keep up on all of my B vitamins. I too now carry a walking stick around with me (it, or a pair of trekking poles), but I don't rely on it full-time, only if I find myself on 'tricky' ground. Me too: some days –– or some hours of the day –– my legs feel really weak, but other days or hours they feel fine. Puzzling. Nor have I confirmed that my leg weakness is connected to my PN. I attribute some, or maybe all, of the weakness to getting older. I use my stationary bicycle as much as possible trying to recover some leg strength. (Interesting: you're in Australia. The online balance program I have been following for the past several months is sent from Perth.)

Ray (@ray666)

Hello Ray,
I don't understand why the swelling is almost gone when I get out of bed. My G.P. says it's because of gravity. Well duh. He hasn't been much help. I hit the bathroom about 3 times during the night. I get most of it out. I have had an EKG and ultrasound on my heart. It is good. The neurologist says after reviewing my results it's not neuropathy. I have a collapsed L-5 to S1. I'm going to start seeing a chiropractor Monday. He does spinal therapy, decompression and a massager.
My wife is reading an article about symptoms of what Gluten does to the body. It looks like it is causing my symptoms. I do know the more liquid I drink the more they swell.
You would think with all of the modern advancements in medicine someone could figure out what is causing this.
Stay safe friend,
Conrad

Hi, Conrad

This will have to be brief. I've promised my partner we'll go shopping this afternoon, but, having just read your message, I've little choice but to send this short reply. I too have had several doctors –– not only my GP –– suggest various causes for my swelling. Each too will prose some fairly simple remedy; e.g., compression stockings, go easy on caffeine, avoid sugars, watch your gluten –– on and on. I'll try each; none has thus far proven itself to be the solution. Good luck with the chiropractor! I'll eagerly await sharing how that goes. (Whoops! My partner just phoned. She's ready for us to go shopping. I'd best scoot. Enjoy the weekend!)

Ray (@ray666)

As far as I know, it is both a pain management med and also an anti-seizure med, I'm using it for pain only.

Hi NJ Ed,
I feel your pain. I know about the blank stare. But I have you beat, It took 6 neurologists to get to My diagnosis: Idiopathic small fiber neuropathy. I am curious about your comment that you think your efforts are helping. What works for you?

Hi Ray, my diagnosis is non length-dependent small fiber neuropathy. Full body plus some organ function is affected. The pain took a few years to fully develop but it’s been ongoing and intense for many years now. I’ve worked constantly with a pain management clinic but they have pretty well exhausted their bag of tricks. The big setback now is that after years of opioids î developed opioid induced hyper alodynia so the opioids were actually causing pain rather than blocking it. So now I’m off of all opioids and the pain is crushing. The best to you. It sounds like you may be dealing with something different. I sure hope so.