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Moderate–Severe Axonal Polyneuropathy: Need help in managing
My 68-year-old mother was recently diagnosed through a nerve conduction study with bilateral, symmetric, sensory greater than motor, moderate-to-severe axonal polyneuropathy.
Her main symptom is heaviness in both legs and difficulty walking, rather than severe pain. Interestingly, when she starts walking, her legs initially feel heavy, but after about 15–20 minutes of walking they often feel lighter and she is able to walk better.
She has had diabetes for about 20 years, but her blood sugar/HbA1c has generally been well controlled. Her kidney tests have been normal, B12 is already high, and a recent brain MRI did not show any significant abnormality.
She was walking normally before undergoing a hysterectomy about six months ago. The leg heaviness started sometime after that surgery. She also underwent thyroid surgery about two months ago, and her thyroid levels after surgery have been reported as normal.
I would really appreciate hearing from anyone who has had a similar axonal sensorimotor polyneuropathy, particularly with leg heaviness or walking difficulty.
What helped you the most?
• Did physical therapy, strengthening or regular walking improve your leg heaviness or walking ability?
• Did you regain strength or function even though the nerve conduction study showed axonal damage?
• How long did it take before you noticed improvement?
• Were doctors able to identify the underlying cause of your axonal neuropathy?
• Did your neurologist repeat the nerve conduction/EMG study later, and did the results improve or stabilize?
• Were there any blood tests, nutritional deficiencies, medications or other conditions that turned out to be important?
• Has anyone experienced neuropathy or significant leg heaviness after major surgery?
• What treatments, medications, exercise programs or lifestyle changes made the biggest difference?
I understand that everyone’s situation is different and that experiences here aren’t a substitute for medical advice. I’m mainly hoping to learn from people who have gone through something similar and understand what helped them regain mobility or prevent progression.
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Hello @rajeshtarakada, welcome to Connect. I see that you found the discussion started by @ray666 and hopefully have read through the discussion to learn what has helped other members with axonal polyneuropathy.
- Axonal peripheral neuropathy: Finally, a diagnosis!: https://connect.mayoclinic.org/discussion/axonal-peripheral-neuropathy-finally-a-diagnosis/.
Tagging @duquer, @carayjoh58, @artemis1886, @njed, and @cap5457 who may be able to share what has helped them. Has your mother's doctor or care team made any recommendations or suggestions on what may help with her being able to walk better?
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2 ReactionsHello, @rajeshtarakada.
I hope I didn't paint too bleak a picture in my reply yesterday. It would have been wrong of me to do so. If my reply was less than 'all wine and roses,' I'd attribute it to yesterday being one of my 'bad' days, but honestly, @rajeshtarakada, my so-called 'bad' days aren't THAT bad; they could certainly be worse. At best, what I was hoping to convey in yesterday's reply is that most strains of peripheral neuropathy have their ups and downs.
I've also learned a crucial lesson in my many months of hanging around Connect: everyone's experience of peripheral neuropathy is different. I've met many people here whose experience is similar, but never a perfect match. You've every reason to keep the faith that your mother's experience will be among the least troublesome.
Once more, I wish you and your mother all the very best!
Ray (@ray666)
@johnbishop
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3 ReactionsHello,
Sorry for what your mother is going through.
I echo the sentiment and comments that no 2 people with the exact same condition respond exactly the same way to treatments or anything else they try. In considering trying what someone else tried and found good results, it’s absolutely imperative to keep in mind and take into consideration the above fact and all the side effects that may occur since no 2 bodies have the exact makeup.
It’s extremely important to always consult the care provider who should, and I mean should, have the complete medical records and history of a patient.
It’s nice to be sharing ideas with others; however, in this case that involves a physical condition, we all need to be extremely vigilant and careful prior to jumping on anything that comes our way. We need to dig very deep into the research.
I wish you and your mom the very best.
Take care and have a serene rest of your weekend,
gus