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ModerateāSevere 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 15ā20 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?
ā¢ Did physical therapy, strengthening or regular walking improve your leg heaviness or walking ability?
ā¢ Did you regain strength or function even though the nerve conduction study showed axonal damage?
ā¢ How long did it take before you noticed improvement?
ā¢ Were doctors able to identify the underlying cause of your axonal neuropathy?
ā¢ Did your neurologist repeat the nerve conduction/EMG study later, and did the results improve or stabilize?
ā¢ Were there any blood tests, nutritional deficiencies, medications or other conditions that turned out to be important?
ā¢ Has anyone experienced neuropathy or significant leg heaviness after major surgery?
ā¢ What treatments, medications, exercise programs or lifestyle changes made the biggest difference?
I understand that everyoneās situation is different and that experiences here arenāt a substitute for medical advice. Iām 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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4 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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5 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, itās 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.
Itās extremely important to always consult the care provider who should, and I mean should, have the complete medical records and history of a patient.
Itās 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
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3 ReactionsHello! I just turned 65 and i am in extremely excellent health - eat clean, exercise daily and do not take any rx drugs, but somehow i was diagnosed with "Bilateral sensorimotor axonal polyneuropathy". My question is, does anyone who has this have excessively dry, crepey wrinkled, loose sandpaper like skin on their legs only??? The rest of my skin is normal! If so, what is anyone using to help the skin?? I have not worn a dress or shorts in public for years because my skin looks like i am 100 years old... š
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1 ReactionWelcome @bunny7883, I don't have the same neuropathy diagnosis but I do have dry skin on my legs and shins. I normally use a magnesium lotion on my legs at night as a moisturizer but I think any good moisturizing lotion or cream should help. It's great to hear that you are in good health and keep active. There is another discussion that mentions bi-lateral sensorimotor axonal polyneuropathy that might be helpful - ModerateāSevere Axonal Polyneuropathy: Need help in managing - https://connect.mayoclinic.org/discussion/moderate-severe-axonal-polyneuropathy-need-help-in-managing/.
Do you have any pain or other neuropathy symptoms related to your diagnosis?
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6 ReactionsHello John,
Thank you for your quick, kind and helpful reply! š I have not tried magnesium lotion - what brand do you use? I will definitely give it a try! Also, do you have any pain with the health issues you are dealing with? I have extreme pain on the bottom of my feet when I stand or walk too much. I have found something amazing which has completely taken the pain away, but a great deal of caution should be used when using. It is a natural product called DMSO. PLEASE do extensive research on this if you want to try it for pain and i can give you some helpful information as well if you are interested.
Thank you again!
Maria Simpson
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2 Reactions@bunny7883 I donāt have any pain with my neuropathy, just numbness and a little tingling. The brand I normally buy is LifeFlo Magnesium lotion.
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4 ReactionsHi @bunny7883,
as @johnbishop mentioned, I combined your discussion with the existing discussion:
"ModerateāSevere Axonal Polyneuropathy: Need help in managing"
- https://connect.mayoclinic.org/discussion/moderate-severe-axonal-polyneuropathy-need-help-in-managing/
Here, members who have participated in this discussion will also have a chance to see your message and join in with their experiences.
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5 ReactionsHi John, sooooo happy that you don't have any pain! Thank you for the brand of magnesium lotion - I have tried their products in the past. Have a lovely weekend!
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1 ReactionThank you Justin - I appreciate your help - I will check it out. Have a great weekend!
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