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!

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

@rebecross

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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If you are on blood pressure meds, especially rampril they will cause the coughing, had terrible issues with my mother on that, and only found out after she passed that it was the rampril that caused it.

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@maremouse

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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Has it affected your walking?

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@diane47

Has it affected your walking?

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It has affected my walking--for my knee it is painful foot turns outward and knee is turning inward so it takes some adjusting, I have been forcing it to try to walk normally with just a limp, but then with the neuropathy the bottom of my feet are burning, sometimes hurting if I am walking too much, but that part is still manageable. Only been using the magnesium oil on the bottom of feet for about three nights now, an find it does help, the pain is not there so much and the tightness isn't as bothersome so maybe it is working, but like I said just started it three days ago.

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My muscles are so tight that I am now working through either a psoas muscle pull or thoughts of a psoas abscess, which is rare) but we are going to do an ultrasound to check it out. I’m very active and stretch and exercise almost every day and am having issues. I’m having issues with other joint soreness as well I’m a golfer

I have neuropathy also. It was going all the way up my legs. I started taking alpha lipodic and it has helped

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For all those suffering from neuropathy, if you might find the Foundation for Neuropathy helpful if you haven't already seen it.

-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/

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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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Okay I am new to this group and just starting to learn so need some info. First off what is MAC? I do not have any infections just inflammation in the right leg/knee. My only real problems are the soreness/tingling and tightening in the bottom of my feet, and at night it gets worse and my ankles and about six inches up my leg are burning and sore. I do have minor arthritus in my right knee and hip--supposed to go for knee replacement but who knows when that will happen. I am just looking for something that would help to alleviate the burning sensations in my feet and leg. So far I am more or less walking okay, I am just very careful especially with the icy conditions out here right now.

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@maremouse

Okay I am new to this group and just starting to learn so need some info. First off what is MAC? I do not have any infections just inflammation in the right leg/knee. My only real problems are the soreness/tingling and tightening in the bottom of my feet, and at night it gets worse and my ankles and about six inches up my leg are burning and sore. I do have minor arthritus in my right knee and hip--supposed to go for knee replacement but who knows when that will happen. I am just looking for something that would help to alleviate the burning sensations in my feet and leg. So far I am more or less walking okay, I am just very careful especially with the icy conditions out here right now.

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MAC lung disease is an infection caused a group of bacteria called Mycobacterium avium complex (MAC). You might find some members with similar symptoms in the following discussion:
--- Sponge Feet, Tingling and Burning: What can help me to get sleep?: https://connect.mayoclinic.org/discussion/sponge-feet/.

Do you think a knee replacement will help with the night time symptoms?

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Yes, I have neuropathy. But it preceded lung diagnosis.

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@johnbishop

MAC lung disease is an infection caused a group of bacteria called Mycobacterium avium complex (MAC). You might find some members with similar symptoms in the following discussion:
--- Sponge Feet, Tingling and Burning: What can help me to get sleep?: https://connect.mayoclinic.org/discussion/sponge-feet/.

Do you think a knee replacement will help with the night time symptoms?

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Thanks for the update, I do not have any other symptoms like lung disease or such, just have the tingling in the feet and pain at times. Have been checked out several times I do not have diabetes or any other problems aside from an enflamed knee which has a torn muniscus slight arthritus and one other torn ligament or such can't remember, all in the one knee so have inflamation, all of which is causing problems and pain, but have decided no matter what going to get back into my exercise routine as I miss the strength in my legs so will see what I can do. Nothing seems to be helping as far as meds and I am not one to take pain meds on a regular basis, I need other alternatives which will help, but the foot pain is more concerning right now as it does not let me sleep. On a regime of B vitamins since august but does not really seem to be helping.

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