The numbness started in my left foot and gradually move to my right foot. I had an electromyogram (EMG) a couple of years ago but the results were inconclusive. The numbness in the toes of both feet is almost complete and has now started in my left hand/fingers. Anyone been diagnosed with peripheral neuropathy? If so, do you recall specifically what tests were done to reach the diagnosis?
Sorry to hear for your diagnosis. My mom was diagnosed with this last year. She couldn’t tell me, she just started sobbing opening, and said read this. She had been diagnosed with everything else the last two years, she might as well have this too. Her’s was known as Guillain-Barre Syndrome. She was recommended to see a foot specialist. He did a few standard tests, checking her reflexes was one, and then hooked her up to what I believe what was the EMG machine which they tested for electrical activity. In about ten minutes he was able to determine her diagnosis, and told her what she had. That’s about as long as the doctor’s visit lasted. He seemed to know what he was doing.
The bad news we learned was that there was no cure, and they really don’t know what causes it, and it could spread to other parts of her body, causing complete paralysis from the neck down. The good news is that it rarely goes that far, and also the syndrome often eventually leaves as mysteriously as it came upon you. To treat the symptoms, we thought was some kind of joke, it seemed like it was just another way the healthcare system could keep you coming back, bilking your insurance company and medicare for all it was worth, without actually doing a damn thing for you. She had hell with her eating, rarely holding anything down, and nothing tasted good to her anymore. We realized we were just going to have to let it run its course.
I remember seeing the list of people GBS generally afflicts. My mom didn’t meet any of those standards. It was a complete mystery to us why she got it and apparently to the doctors too. My mom passed this last Christmas, but it wasn’t because of this, but because of an infection she got while in the hospital.
All of this is from memory, and I think I got most of this right, but I’m sure you’ve studied up on this as well. Anyway, if yours is similar, the odds are in your favor that it will leave you, hopefully yours will be in weeks or no more than months, and not years, which I think it was the rarest for it to go for that long, IIRC. Or maybe yours isn’t related to GBS. The best of luck.
I have it. My previous thread on the subject. It pretty much details everything I’ve been going through; please read it first. They are tentatively calling mine peripheral or diabetic neuropathy. and it’s been a very long time, and they definitely didn’t diagnose it in just 10 minutes. They still don’t know, and Guillain-Barre Syndrome has never even come up in any conversation with any of my doctors. A foot specialist is not needed. A neurologist is what you need.
I took another nerve conductivity test since my last update (that is what the neurologist will (or should) want to do); my reflexes are getting worse. They also ordered a ton of blood tests to be done, to the tune of over $2,000(!). Insurance covered all but $1,000, since it’s a gene test and my insurance company does not consider it to be helpful, as it is an experimental test. My parents coughed up the $1,000 and I am awaiting the results June 25 (yes I’ve been procrastinating). They still want me to do the bone marrow aspiration (dig in my hip bone and take some) but if insurance doesn’t cover it, that’s where I’m stuck, and will remain so, because I’m not borrowing any more money that I can’t pay back.
Currently on Gabapentin still; they changed my dose to 2 300mg at dinner (before, it had been 3 300mg at bedtime). It only takes the edge off but I can manage the pain and even sleep well unless I get a cramp. I stopped taking Lyrica; it had been making me depressed and interacting with the gabapentin in such a way that I was in a car accident on the way to work one morning and don’t remember any of it. (Wasn’t injured; just a seat belt burn even though I flipped the car and totalled it.) I am still extremely tired every day though, and nap for about 2 hours after work. I also do not eat some days if I don’t feel like it.
I have been wearing heel-less sandals and flip flops since last year, even every single day of winter. They come off immediately indoors and I walk around barefoot even at work. There is no more swelling. Although it can be controlled, there is no cure.
I hope this helps. And I’m sorry for your loss, razncain.
Thank you for your information on GBS razncain. It is now on my radar. I apologize if this post stirred up painful memories. Best to you.
I have had it for more than a decade. It started with tingling in my toes. My family doctor sent me to a neurologist for an electromyogram. This was a rather unpleasant procedure that confirmed the diagnosis. There was no treatment and the guy asked me to come back in 18 months to see how it had progressed. Since there was no treatment, why repeat that unpleasant procedure?
How has it progressed? Well now both feet tingle all over and my balance is affected but otherwise no other problems.
This sounds exactly like what is happening to me Hari Seldon. But recently it has moved to my left fingers. Regarding the electromyogram. When I had this test I remember that at first, the tiny electric shocks weren’t much of a nuisance. But after 20 minutes I mentioned to the doctor that I would gladly tell him anything he wanted to know if he agreed to stop. :eek:
I went back and reread your original thread. (My Google fu must have been weak when I first searched for this). The only symptom I have that you listed is the first one:
toes are numb but I can still feel them
rubbing the top of the foot hurts and feels numb, some swelling
soles of feet feel like I’ve been caned, hurts to walk and put pressure on them (not the arches)
varying degrees, sometimes okay, sometimes goes halfway up my legs
severe cramping (also happens in my hands)
Thank you for your input. Really sorry for your condition. Hope you find some relief. (Steroid therapy?)
I have it. My neurologist told me there was about a 40% chance we’d never find out the reason, and sure enough, we haven’t.
For me, it’s a nuisance but it hasn’t affected my life substantially, and it hasn’t gotten worse. In general, I just feel like my feet are surrounded by an inch of foam rubber everywhere I go.
There HAS been one serious consequence, however. A few years go, I went to a water park with my son. The ground was very hot, but even when I was barefoot, I barely felt it. I got several blisters, and barely felt them. They got infected, and I ended up with severe cellulitis in my legs, and had to go to the hospital for 3 nights, getting pumped with antibiotics… all because I didn’t really feel my toes burning or the pain of the initial infecttions.
Moral: if you lack sensation in your feet, keep your feet protected! And check them every night to make sure there are no wounds or blisters that you weren’t aware of.
Mine was never more than numbness on the soles of my feet, together with tingling and a burning sensation. When I went to the clinic, they immediately tested me for type 2 diabetes and started treating that. From that point, the clinic wasn’t interested in the neuropathy except as a symptom of diabetes. It’s slowly faded.
My current doctor asks about it during check-ups, but as long as it’s mild and not getting worse, she just makes a note.
Since that original thread (I wasn’t sure if I had mentioned it in there at that point or not), the fingertips in both hands have become numb. The swelling has gone away on its own. Maybe when the blood tests come back they can diagnose it as diabetic neuropathy and then treat the diabetes. When my mother was diagnosed, her doctor told her that’s what she had and she said, “but I don’t have diabetes.” He said, “you will.” And indeed she did. I guess I’d rather have Type 2 diabetes than have my feet burning and numb at the same time, 24/7. As for my fingertips, I can hold hot objects but so far haven’t accidentally burnt myself.
I agree with the above; definitely keep an eye on your feet where they are numb for small injuries that you might not have felt.
Didn’t read the previous thread. Don’t remember if I posted.
My Mom , at about age 70, got it. Her GP said “you’re just getting old.” She got another doctor who said she had a B-12 lack of absorption. She had to go to shots.
Halted the progression. Obviously no reversal.
This is excellent advice, astorian. A few weeks ago I ran a bath and then dipped my toe in the water. Felt fine. I then bent down to whirl the water with a bit of bubble suds. Damn near burned my hand. Looked at my toe and it was beet red. I’ll never do that again.
It’s scary. I think I have a Vitamin B deficiency too. I was prescribed it. I was also prescribed a huge dose of Vitamin D. In addition to the cramping I have in my feet which I am sure is potassium deficiency. I am seriously thinking of getting one of those multi vitamines/minerals.
Well go forth and do it, man. Its OTC and may make a difference.
I had an electromyogram which confirmed the diagnosis and extensive blood tests because my neurologist was convinced mine was caused by some sort of vitamin deficiency and would be easily curable. Right. After nothing was found in the blood work she more or less threw up her hands and said there was nothing she could do.
I had considerable pain at first which is why I originally sought treatment but now actual pain is rare. I do have nearly constant numbness, tingling, burning sensations, freezing sensations in my feet along with severe cramping and balance problems and ataxia. Also now some numbness and tingling in my hands. I drop things a lot.
Sister Vigilante, thank you for sharing that thread and I am so sorry you are dealing with pain. I was on Lyrica for a while and had the same experience as you and was switched to Gabapentin which I think was a godsend. I havent taken any in a while though.
I have been diagnosed with neuropathy, but also had about 2 years of chemotherapy back in late 1989 to 1991, my feet are numb on the bottom, but my fingertips on both hands are too, an when its gets cold they turn pure white where the blood has left, and then hurt like hell when they warm back up feels like your nails are being pulled off, I wish there was something that would help, but don’t think so, chemo killed the nerves but just at the extremities, also have poor equilibrium, if I close my eyes while standing or look up while standing I get dizzy and disorientated.
Here is a list of potential causes along with the lab tests needed to diagnose it.
I’m sure, sadly, that that list is not conclusive. According to that page and others I’ve seen about 30% of PN is due to high blood sugar. However my A1C is 5.6 so I don’t think that would be a cause for me. It could be a shit ton of things. Diabetes, another metabolic/endocrine issue, autoimmune problems, infections, metal toxicity, vitamin/mineral deficiency, etc. etc.
If it is due to high blood sugar things like alpha lipoic acid and benfotiamine could reverse it, but I don’t think they work on PN due to issues other than diabetes.