Reaching out to Senior members tonight because I am really struggling with balance and walking.

I was diagnosed with PN in November (EMG test) and started B12 therapy mid-December; we suspected the cause was long term use of PPI med and 18 months of high-dose metformin. I had mild symptoms for years (numb toes that I pretty much ignored) but symptoms accelerated rapidly: Ankles stiff, numb feet, pain, cramping in lower legs and back of legs all the way up. I manage symptoms with 300mg's Nuerontin and 400 mgs NSAIDS 4x per day.

There has been no progression of PN symptoms and I am even noticing improvement in my upper body, but walking and balance is worsening. I am very unsteady on my feet and cannot walk more than a couple of blocks without experiencing pain and weakness in my lower legs. I also walk much slower than I used to and I think I walk "like a drunk" ... people are starting to notice!

What have others experienced when first diagnosed?

Thank you in advance for your help!!

I'm afraid my problems only increased. I tried Physical Therapy but didn't have enough improvement in five weeks of sessions, twice a week with practice between.

I did however, get leg braces, which have vastly improved my balance and walking.

I have PROFOUND PN with two of the three major leg nerves GONE, and the third one severely damaged.

I start Physical therapy tomorrow to learn how to get maximum results.

I have had the braces for three weeks, and hate to take them off to go to bed.

Best wishes, ElaineD

Has your spine been checked to rule out any causes there for some of the leg issues?
Has blood flow been assessed in legs?

I know of someone that had blocked blood flow in his legs, and spinal issues.

I would make sure any possible causes are ruled in or out as treatment for those may be helpful.

I tried all the U-tube exercizes focused on balance and as soon as I closed my eyes I would topple over. I had to use a walker to walk for a while as leg strength went down also. But that got better. I had to hold on to the shower head and hope that the pipes held. That is better but still dicey when eyes are closed and looking upward. I installed grab bars in the bath so to have three points of contact while getting in and out of tub and also to push off from toilet. I tried walking on grass as was suggested and yes it's terrifying and uses muscles differently but the improvement is soooo sloooow. I got a spin bike and do daily time on it, easy to manage and stretches hips and knees and ankles. I never found any one thing that was good for balance except patience. Sorry for being a smarta$$ I am almost three years in and had your symptoms before gitting in a fender-bender.My legs got stronger after my b-12 got up around 900+. Good Luck, Ken in Texas.

Thanks to all for the info. The suggestion to check blood flow is very helpful; my dad had arteriosclerosis and had stents put in legs so perhaps I have two problems! My b12 is high and I am hopeful that some nerves will heal, or at least the b12 will stop progression.

I will start exercising - we have a gym in my building and pedaling a bike sounds great! I can sit which is the only time I feel secure. I have been quite sedentary and pretty depressed, so it's time to get up and go!

Thank you again for your help ! And best wishes ... sending good thoughts and encouragement your way.

I found that a single 50mg caplet of Tramadol improved my balance & unsteadiness by taking away some of the tingling & such I have the soles of my feet. It really lasts me pretty much all day. It also helped with some of the achiness in my feet & lower legs. A couple of days a week, when we go someplace, I take 2. Of course, I also take nortriptyline daily to help with my pins & needles and other pain.

what was your b12 levels, i second that mri to see if your spine is causing the balancing issues, specifically cervical area

Thank you! This is very helpful. I hadn't heard of either of these meds. I will see a neuro-muscular disease specialist on Tuesday and pass along your success with the drug. I will also check out the anti-depressant you mention. I do find that Xanax has been helpful ... anxiety definitely heightens symptoms so I take a low-dose throughout the day. As the Brits say: Be calm and carry on!

Thank you again ... I very much appreciate your help.

My b12 is sky high right now but I did have a spine MRI in October. Docs suspected stenosis causing numbness in toes, but ruled it out. I have "mild stenosis" but I will ask the Neuro-muscular doc to take another look.

Symptoms accelerated in early November ... very sudden onset of full body tingling, cramping and twitching muscles. Lower legs mostly affected up to knees and mild balance and walking issues at first, but much more difficult now.

I also had just had a flu and Pneumonia vaccination in October and still wonder if that had something to do with the sudden onset. But, at this point I just want to deal with the disease and your suggestion to take another look at the spine is very helpful.

thank you!

I had every test under the sun, many times......Nerve conduction is the gold standard, but I had: MRis of everything, spinal tap, every blood test known to science, several peripheral blood flow tests, and maybe more.

My PN is most likely the result of my own Immune System mounting an attack on my nervous system. It also took out my saliva/tears/moisture glands, has attacked my lungs (small airway obstruction) my ears (Meniere's) and I have small fiber neuropathy, and bleeding and inflammation of my bladder (Interstitial cystitis), AND there are more but I'm tired of thinking about them.

I have Primary Immune Deficiency, and my Immune system, when doesn't attack foreign infections DOES ATTACK my own body.

I have a transfusion of the immune factor I need, every month, and will for the rest of my life.

I tried Methyl B-12, for almost two years, with no help.

Exercise in a warm pool and on the Nu Step help....but My legs are atrophying and this PN is serious serious stuff.

Best wishes to you all. ElaineD