I have to have EMG/ NCS test done as a result of leg muscles failure

Posted by timely @timely, 5 days ago

I am beginning to be concerned.

I have breast lymphedema. I am afraid of getting leg lymphedema from the EMG test with needle insertion.

My 2nd concern is the fact that after one use of the EMS treatment by my Osteoporosis PT, I got a permanent circle of veins sticking ou where the patches were placed.
Both the Osteoporosis PT and the sports medicine doctor said that they had never seen that before.

Afraid that the NCS will cause this too.

Also concerned about bleeding after the EMG as I take Eliquis.
I also have an ultrasound scheduled first week in October with a vascular surgeon to evaluate vein circulation.

I am considering canceling entirely or scheduling after I have the ultrasound and see the vascular doctor.

I am now off Letrozole for 3 months til October 7rh.

I have had so many close calls of falling with leg muscles giving out without warning in the the last 3 months of Letrozole which was stopped 7-07-25.

Have still had this same muscle weakness even after Letrozole stopping.
Really need some feedback or direction as to who I should discuss all this with…

Interested in more discussions like this? Go to the Breast Cancer Support Group.

timely | @timely | 2 days ago

@myoga

I have been exercising. sigh.

myoga | @myoga | 2 days ago

In reply to @timely "@myoga I have been exercising. sigh." + (show)

Omg! So 50% of us are suffering from AIMSS! When I first took Anastrozole I used to feel like the little mermaid who traded her hair for a pair of legs, especially in the morning. Every step was so painful. I had to walk in pain for 10 mins before the pain went away. I quit anastrozole and felt better with Exemestane until the petechiea. I had no idea that we are genetically predisposed to AIMSS. You’re right, doctors wouldn’t tell us, but probably because they haven’t read this report.
Your side effects are so extreme that exercise is not going to help much! You’re a strong person and you shouldn’t feel guilty about something that you have no control of. How many people can tough it up as long as you did?

If you had chemo, then not taking AI is probably ok. I think chemo is more effective in killing rogue cancer cells. Then again it’s just my feeling. I'm not a doctor.

Thanks for the information about AIMSS.

timely | @timely | 1 day ago

@myoga

I was IB ILC and had radiation therapy for 21 days.

No chemotherapy. I do take many herbal remedies and Reservatrol.

Whatever I take as an AI will most likely cause muscle weakness.
If I take Exemestane, I risk carpal tunnel syndrome and not having hand strength to get up if I can’t easily get up from a chair because of leg muscle weakness.

A woman from. Australia knew all about AIMSS on the breast cancer site that I am on.
Only one US woman said that her doctor told her about AIMSS.

I just read about some difficult leg muscle side effects on this site taking bone building drugs.
My medical oncologist agreed with me about not using Proilia which is the only one the osteoporosis NP said I could use but did not say why.

myoga | @myoga | 18 hours ago

In reply to @timely "@myoga I was IB ILC and had radiation therapy for 21 days. No chemotherapy. I do..." + (show)

@timely
It's the first time I heard about AMISS. I don't think many oncologists know about that either. Probably it's a rare reaction like my petechia. I was able to find an article about skin problems caused by AIs. But AMISS is a serious reaction that needs to be well documented so both patients and doctors are aware of.
I don't know much about osteoporosis meds. I will have DEXA soon to see if AIs have helped me advance to osteoporosis! Then I will have to learn about Prolia, Tymlos, and similar junks. Another drugs with bad side effects to worry about!
Timely, even if we go through all treatments as prescribed, there is no guarantee that there'll be no recurrence. And when we skip a treatment, we might be just fine. We just do what we can and hope that works. Best of luck to all of us! HUGS.