Does anyone else have neuropathy?

Posted by diane47 @diane47, Jan 27 4:51pm

I had mild neuropathy when I started treatment for MAC. Then the neuropathy got worse and the Dr thought the Ethabutol might be making it worse, so stopped the Ethambutol. The neuropathy has continued to get worse. I can still walk with a walking stick for about 20 minutes max and I just wonder if anyone else has had this problem? Thanks!

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@lyntriff

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?

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Glad to hear you are walking again! Hope things will continue to improve for you.

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@rbl

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.

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I like the shoes in the Cosy Feet catalogue.

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@egayle187

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.

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I'm sticking with the antibiotics at until March ( have a lung scan is February). I also do airway clearance every day. Thank you for the advice about shoes!

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@rbl

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.

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I had the same issues and was told it wasn’t the ethambutol causing the problems but neuropathy is a known side effect of that medicine and I’m convinced that’s what caused mine.

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@rbl

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.

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I have numbness in my feet, leg pain and swelling in both legs. I had a wellness check last month and they suggested that I get a new Neurologist and get tested again for Neuropathy even thought the first test said I was negative. I was on the big 3 for 14 months then taken off ethambutol for failing 3 field eye tests. the symptoms are getting worse even thought I have been off ethambutol for 9 months. They have now added Arikacye to the list.

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interesting to note all the comments and helpful. I have no idea what some of the meds/injections you are talking about are, never heard of them but then I am just getting into trying to find out what is going to help me. I am on nerve support, which is a b-vitamin regime seems to be helping but apparently it takes a long time to really work. Will stick with it for a while ands see if it really helps. Love getting the insight from others, thanks for the info.

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@lyntriff

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?

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Well one thing is for sure I am determined as well, do not give in to anything if I can help it, so happy to see that you with determination are walking again. I also have a knee problem, mild arthritus, torn miniscus, and he mentioned something else, supposed to go for knee replacement but around here that can take two years or more, so am looking into other alternatives . Makes it difficult when you are in pain for walking from a couple of different issues, but have come across others who had the same problems and they went through physio and such and it has helped so will be getting the paper work to do this on my own. I miss not being able to do my exercises and strength lifting, which also leads to weight gain, not a good thing to have if you have a sore knee Noticed the PN got a bit worse one day after a reflexology treatment, but it was the first one, the next day felt better, so will continue with that as well,. Gotta find something that works I do not like taking meds all the time.

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@maremouse

Well one thing is for sure I am determined as well, do not give in to anything if I can help it, so happy to see that you with determination are walking again. I also have a knee problem, mild arthritus, torn miniscus, and he mentioned something else, supposed to go for knee replacement but around here that can take two years or more, so am looking into other alternatives . Makes it difficult when you are in pain for walking from a couple of different issues, but have come across others who had the same problems and they went through physio and such and it has helped so will be getting the paper work to do this on my own. I miss not being able to do my exercises and strength lifting, which also leads to weight gain, not a good thing to have if you have a sore knee Noticed the PN got a bit worse one day after a reflexology treatment, but it was the first one, the next day felt better, so will continue with that as well,. Gotta find something that works I do not like taking meds all the time.

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Hi Maremouse. Do you have MAC or another infection as well as bronchiectasis? How does that impact your walking/arthritis issues? Good for you to keep at it!

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Another thought: I was complaining about the hideous deep tickle in the throat right before a coughing fit, and was told by an unrelated doctor who has neuropathy, that alpha lipoic acid, a supplement, can sometimes help diabetics with neuropathy, and other "nervy" issues. My cough has since been determined (by CT scan) to likely be unrelated to BX, since it turns out I actually have very little of that! Now they blame a combo of reflux (heard that before) and a "neurogenic" ie impossible to pin down problem. Much to my surprise the alpha lipoic acid has helped!!

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@tcd518

Hi Maremouse. Do you have MAC or another infection as well as bronchiectasis? How does that impact your walking/arthritis issues? Good for you to keep at it!

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I have no other problems just a bad knee for which I need to get replacement plus the swelling in it, otherwise I just have the burning and hurting sensations in my feet and ankles

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