Tingling and numbness in arms and legs related to MAC?

Posted by kathyhg @kathyhg, Dec 8, 2019

I have found this forum so helpful and I pass a lot of information on to my sister who also has MAC and who has not had to go on medication yet. One of the troubling symptoms for her, that I don't have, is tingling and numbness in her hands and legs, especially at night. She has restless leg syndrome but this is much worse, according to her. She also has some muscle pain and burning sensation in her shoulders and neck. This all started around the time that she was sick and was diagnosed with Mac. She's been tested for every possible disease/syndrome but all the test results come back negative.

Has anyone experienced anything like this?

Thanks in advance.

@kathyhg…I experienced all of the symptoms you mentioned in addition to chest pains and muscle spasms around the bra line. I found relief from acupuncture. My nerves become agitated and acupuncture worked to calm them. I still get numbness and muscle spasms, but they are not as strong or frequent. I also take magnesium. Has your sister had her O2 level checked while moving? Mine was fine while sitting in doctor's office, so I had no idea it dropped too low until my acupuncturist said my face showed lack of O2 and to get a test at doctor's office.After 2 yrs on O2 tanks, I am now breathing well on my own.

REPLY

Hi Kathy,
I had/have similar symptoms. I was diagnosed with MAC 15 years ago, was on the "Big 3" for 18 months, and have done well since then until last November when the MAC returned. At the same time I found that out, I became ill with a viral/flu-like illness. Shortly thereafter, I started with tingling and weakness in my lower legs, feet, arms,and hands. Like your sister, I had many tests done to determine what was causing it. In the end, it was decided that I had a post viral neuropathy caused by the flu-like illness. The doctor that treats my MAC does not feel that it is/was related to the MAC. My symptoms are better, but have not resolved. We are going to start treating the MAC in a couple of weeks. It will be interesting to see if the neuropathy symptoms go away – I'm not convinced that the two are not related.

REPLY
@cindy62

Hi Kathy,
I had/have similar symptoms. I was diagnosed with MAC 15 years ago, was on the "Big 3" for 18 months, and have done well since then until last November when the MAC returned. At the same time I found that out, I became ill with a viral/flu-like illness. Shortly thereafter, I started with tingling and weakness in my lower legs, feet, arms,and hands. Like your sister, I had many tests done to determine what was causing it. In the end, it was decided that I had a post viral neuropathy caused by the flu-like illness. The doctor that treats my MAC does not feel that it is/was related to the MAC. My symptoms are better, but have not resolved. We are going to start treating the MAC in a couple of weeks. It will be interesting to see if the neuropathy symptoms go away – I'm not convinced that the two are not related.

Jump to this post

April 2019 went to ER with tingling and numbness legs arms feet. Was sent home anxiety I didn’t believe that three days later back in hospital three days. I told them my doctor has me on symbicort spray I think it’s that no way I was told. Came home stopped the inhaler. Symptoms went away. I do need it so I just spray once in morning and once evening. Doctor have me twice morning twice evening. We need to no our bodies

REPLY

Kathy, leg parathesias can result from a B-12 deficiency which should be easy to remedy. I’ve not come across info relating it to MAC or bronchiectasis; at least not directly. A doc can order injections which can be administered at CVS Minute Clinic. Might be worth a try. Don

REPLY

Could it be restless leg syndrome?

REPLY

Thanks for everyone's suggestions. They were very helpful and perhaps will get my sister to join this forum as well.
She has had restless leg syndrome for years but says this feels different. She is looking into everything and will present these options to her doctors to explore further. Post viral syndrome sounds most likely to her.
Thanks again.

REPLY
Please login or register to post a reply.