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

I’m throwing out an idea - may be way out in left field - but if it were me I’d be asking about whether this is a new onset of autoimmune myositis (muscle inflammation). There might be elevated creatine kinase (CK) levels. I’m not a medical professional, but my granddaughter has a type of myositis with main feature of leg weakness. She was having difficulty getting up from the floor. She has a juvenile version, but some myositis are more found in late 40s or 50s.
If you’re interested you could probably find info on the web - here is some info I found:
https://www.sciencedirect.com/science/article/pii/S1297319X21001810#:~:text=We%20presented%20three%20cases%20of,stopping%20AI%20is%202.5%20years

Hi! @timely:

I am so sorry that you've been through so much, my heart and prayers went out for you upon reading this post!

Unfortunately for me, I am not a medical expert and I can't provide any medical help; however, the serious leg muscle failure that you'd experienced worries me. I am afraid that what you've been suffering may indicate some serious health issues other than the side effects that had been caused by taking Letrozole; because you had stopped taking Letrozole for almost 2 months now and have still had this same muscle weakness:( If I were you, I would definitely keep the appointment of ultrasound scheduled first week in October with a vascular surgeon to evaluate vein circulation, and would try to schedule an appointment as soon as possible with my primary care physician to evaluate my overall health providing him/her with all my ongoing treatments and medications that have been taking. I am so sorry for your suffering, my comrade...

Best wishes to you all on the journey ahead with better health, hope, peace and love!

@lifetraveler

I will go to the vascular surgeon Oct. 9th.

I have a new appointment for December for the EMG/CMS and am on a wait list for cancellations for after the vascular surgeon appointment and ultrasound in October.
That makes more sense.

I have an appointment with my Internist for the end of October already. So, he can figure out everything after the ultrasound.
See medical oncologist end of October too.

All my muscle loss is caused by the Letrozole which also gave me plantar fasciitis and foot and leg neuropathy in the last month or so of taking it. Letrozole causes muscle loss, neuropathy, and plantar fasciitis.

I was so wiped out by the Letrozole in the last year of taking it that I could not exercise much.
It also added more arrhythmias to my arrhythmias. That is not as bad now.

Hi! @timely:

I truly think and firmly believe that you should discuss all these painful issues and ongoing treatments with your primary care physician as soon as possible.

I really can't provide any medical advice / opinion because I am not any medical expert; I can only share with you how I deal with all my body's reactions to the lack of estrogens after taking any AI medicines to block hormone production. Due to the fact that I declined the radiation treatment for fear of its potential long term effect at my old age, I decided that I have to continue taking Anastrozole, Letrozole, etc., to keep the BC recurrence at bay and mitigate these pain & aches with physical therapy. Earlier this year, I experienced acute neck pain along with numbness and tingling pain in both arms. Unfortunately my PCP suffered a family emergency at that time, so her assistance sent me back to PT/OT to reduce my pain. Got a referral to see a doctor of PHYSICAL MEDICINE & REHAB; and this new doctor confirmed that I indeed suffered Neck pain and BL arm dysesthesias. He recommended EMG test to measure the electrical activity of muscles and nerves to diagnose nerve and muscle disorders. I asked for MRI CERVICAL SPINE Without CONTRAST instead, because I am certain I have multiple issues of nerves, what is the point to identify which nerves are acting up? Further, I also am scared of the needle insertions to my various nerves during the EMG test procedure. Thankfully, the MRI confirms that I have Anterior osteophytes on the front of my neck bones and disc osteophyte (bone spurs) at other spots, so I continue my PT sessions diligently to get the relief. Later on when I saw my surgical oncologist and asked her to review my MRI cervical spine report, she confirmed that physical therapy is my best and only ongoing option.

Sorry for such a lengthy note, Timely! I pray that you get to discuss all your issues with your PCP soon and get the most accurate diagnosis and best treatment going forward.

Best wishes to all!

Sorry it happens to you. I hope that with time your legs will regain their strength. I don't have any advice because I didn't experience that while taking Letrozole. I just want to wish you good luck and pray that you will regain muscles strength. If the side effects are that bad, maybe you should not take Letrozole again?

I've tried all three AIs and the worst one for me is Letrozole. I had migraines so badly that they woke me up at night. Aromatase inhibitors affect everyone differently! Hugs.

@myoga

I am 77. I took one tablet of Anestrozole in Oct. 2022.
Thirty minutes later, both legs tingled on both outer muscles two inches above and below both knees for for about ten seconds and then both legs gave out at the same time. I grabbed the bathroom sink and did not fall.
The next day my pulse was 150. Radiation oncologist said to stop.
Rare side effect.

On Breckinridge Letrozole from 3/18/24 ton 3/18/25.Stopped because
of severe total hip pain at night and using bathroom 7 times that high and not sleeping at all.
4/25-2025 to 07-07-2025 with Accord Letrozole.
Stopped because of same sets of muscles above and below outer knees giving out without warning at various times. During last month of Accord Letrozole, ended up with leg and feet neuropathy and Achilles tendinitis which have not gone away.
Slowly not having as much leg muscle weakness and muscle giving away.

There is something in both the Anestrozole and the Accord Letrozole that I am allergic to….Additives?

Obviously, the Internist would have no clue….Not his field.

I will send Internist a message on My Chart to see if he wants to see me.

@myoga

“If severe muscle weakness and muscle failure from two different aromatase inhibitors (AIs) result in falling, the most critical step is to consult your oncologist immediately. This serious condition, often called Aromatase Inhibitor-Associated Musculoskeletal Syndrome (AIMSS), can significantly impact quality of life and treatment adherence. “

That's a serious side effect that I don't know about and I'm sure lots of us are not aware of! Thank you for such useful information to bring awareness to those of us taking AIs. Doctors probably don't know about it either. I don't think it's because of low estrogen. It's probably due to the mechanism to achieve low estrogen or the fillers.

I pray that with time that horrible side effect will go away. As if having cancer is not bad enough, we have to endure crippling side effects just to be alive
I'm taking Exemestane for 8 moths without serious side effects until mastectomy. Now it's causing petechiae! I wonder if the pharmacy ordered the new batches from different manufacturers.

How are you doing now? Does it seem to get any better? It's a silly question but would physical therapy help at all?

Aromatase Inhibitor-Associated Musculoskeletal Syndrome: Understanding Mechanisms and Management. ( AIMSS)

Frontiers In Endrocrinology
https://pmc.ncbi.nlm.nih.gov/articles/PMC8353230/
“Aromatase inhibitors (AIs) are a key component in the chemoprevention and treatment of hormone receptor-positive (HR+) breast cancer. While the addition of AI therapy has improved cancer-related outcomes in the management of HR+ breast cancer, AIs are associated with musculoskeletal adverse effects known as the aromatase inhibitor-associated musculoskeletal syndrome (AIMSS) that limit its tolerability and use. AIMSS is mainly comprised of AI-associated bone loss and arthralgias that affect up to half of women on AI therapy and detrimentally impact patient quality of life and treatment adherence. The pathophysiology of AIMSS is not fully understood though has been proposed to be related to estrogen deprivation within the musculoskeletal and nervous systems. This review aims to characterize the prevalence, risk factors, and clinical features of AIMSS, and explore the syndrome’s underlying mechanisms and management strategies.”

Aromatase Inhibitor-Associated Musculoskeletal Syndrome: Understanding Mechanisms and Management
Aromatase Inhibitor-Associated Musculoskeletal Syndrome: Understanding Mechanisms and Management
https://pmc.ncbi.nlm.nih.gov/articles/PMC8353230/

@myoga

I can’t believe that I finally found a lot of studies which say that those of us who have symptoms while taking Aromatase Inhibitors are a genetic predisposition and carriers of genes that cause increased risk of AIMSS.

All this time I felt that something was wrong with me because I had all these muscle and joint problems and pain while on an Aromatase Inhibitor and others did not.

One feels guilty and thinks that one should just tough it up because others have basically no symptoms at all.

So certain genes, SNP, single nucleotide polymorphisms, can cause AIMSS pain. Studies have talked about this in the NIH and other sites in 2021 and 2024. (There seem to be no further studies to solve this………)
But your Dr. doesn’t say this.
They still haven’t come up with any remedies and just offer the basic ideas, exercise, tai chi, yoga, and acupuncture.

Plus, there is the possibility that all of the AI’s and tamoxifen may cause AIMSS in the same person.