Does anyone else have neuropathy?

Hi diane47, Yes I have neuropathy in both legs, It is worse in the left. Mine is also from Ethambutol. I was on that drug, and 2 other oral ones for 18 months. Also, on 2 IV drugs 2 times a day, 3 times a week, for 9 months.
Hard to say which drug did the damage, but Ethambutol is notorious for doing that.
I had 2 mycrobacteria infections at the time, so the drug was kept in place. I guess lesser of the 2 evils.
I have been off them 15 years now. I have numbness, and pins and needles in left leg. I don't use a cane as I can still feeling in feet I am very careful when and where I walk. I have a burning sensation in my foot and calf often and a strange feeling like humming. Not that I can hear, it just has a hum feeling to it. If I walk too much it gets bad, painfully so. I had emg testing for weeks. Never changed.
I now have MAC, not treated. I'm hoping it never needs treating! I have bad allergies to most drugs that are used for MAC.

I have numbing on both feet they feel like walking on bumps. My legs swell and ache all the time. I was on the big 3 for 14 months then had to go off ethambutol because I failed 3 field eye tests. In november Aricayce was added. A Neurologist ruled out neuropathy but after my last wellness appt they suggested I have another test with a different dr. I am 77 yrs old so have to be careful in my walking.

I also have neuropathy, I started getting it around 2017, when I was on my feet a lot, they told me it was plantar faciatus and to use special insoles, well after trying them for years, it did not help, and am trying something else now for Nerve support--a complex method of b-vitamins, which seemed to help a bit but not getting the relief I need so was wondering if the magnesium oil would work--sprayed on the bottom of the feet, and if it is safe, a friend of mine uses it and says it works for him. I really need to get this pain dealt with, find it is worse at night when I am trying to sleep and I am 75 years old., but a very active person and this is definitely interfering with my life style, would like to find something that would actually help

I also have PN supposedly caused by Rheumatoid Arthritis I think mine has progressed since diagnosis in May after 3 months in hospital and rehab after i was told i wouldnt walk again but with determination and exercise and physio i am now walking again I have just had Rituximab Infusions and hoping it will help Has anyone had this medication and did it help?

Hi Diane, I had bad foot burning and tingling up to my calves. It is hard to say what MAC med it was, I think IV amikacin. I Went to a chiropractor and had laser I think 10 sessions ( Medicare does not cover it. It was I think $50 each)I must say it helped). Also my neurologist ordered vit B12 and B6 and D tests and vitb12 was low. I get shots every month for 6 months but it’s gone. Hard to say what helped but ask you dr for vitB tests- Medicare pays for that and the shots are about a dollar each with the prescription. Well worth trying

I am so glad to see this post, I also have tingling and numbness in my toes. I can’t seem to find shoes that are comfortable and I have achy ankles, knees and hips. It was worse when I was on levequin but it’s still bothersome. I mentioned to my dr. It might be from ethambutol and she said she didn’t think so. I only have 4 month left so she wants to keep me on the ethambutol.

I will mention that acupuncture helped manage my numbness and tingling in feet plus fibromyalgia related pain all over.
The sad truth is that people who can afford seeing an acupuncturist, podiatrist or having an evaluation and treatment at the Good Feet store (mine with shoes cost $1900.) are able to manage the foot problems. My podiatrist recommended Drew or Brooks shoes with laces. They are expensive, but they have kept me from breaking anymore foot bones. The Good Feet inserts got rid of foot, ankle, knee and back pain.
One more point about MAC treatment: stick with it unless you have eye problems. My MAC destroyed a lobe in my right lung. I now have Bronchiectasis, too. I have been exacerbation free for 10 years with daily management, nebulizing and postural drainage.

I did 40 months of Ethambutol, now 15 of Voriconazole. My toes on both feet are numb/tingly. I have poor balance on the left leg. Currently in PT. It's hard to get diagnoses when you have all these lung diseases.

Thank you for your history with neuropathy. It's very helpful to read about your experience. At present I'm trying to get an idea of how quickly my neuropathy will progress, since my doctor told me it will.

I am your age. When he diagnosed the neuropathy, the neurologist asked if I had ever fallen. Fortunately, I have not. But I notice my balance is affected and I try to be careful.