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Neuropathy Help

Posted by asd @asd, Jul 19, 2022

As the caregiver and mother of a 39 year old single mother of two, I am looking for ideas to take care of her. I am 74 years old and she has two tiny children and it’s really hard. She has been going to doctors for nine months all over, has had every test imaginable, and her specialist in the big city is absolutely perplexed. She woke up 9 months ago and couldn’t walk and her hands don’t work. . She and her boys now live with me and she drags herself around in the house on a non-wheeled walker and is now moving to a wheelchair. Her mind is fine but she can’t walk or do anything with her hands like hold a cup. I have all sorts of accessible aids but she can’t bend over, can’t bathe let alone do anything in the house. One doctor told us nerves don’t regenerate so she can only stay the same or get worse. If anyone can point me to resources for information, I would appreciate it. God is watching over us as I know it could be much worse. Thank you.

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Mentor
John, Volunteer Mentor | @johnbishop | Jul 19, 2022

Hello @asd, Welcome to Connect. I can't begin to imagine how difficult it must be for you or your daughter. I'm glad you are able to advocate for your daughter and are looking for information on neuropathy. Learning as much as you can about her condition can be helpful to know what treatments may be available. Here are my favorite sources for learning more about neuropathy and possible treatments.

-- Neuropathy Commons: https://neuropathycommons.org/index.php/neuropathy/neuropathy-overview
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/

Don't be discouraged by the doctors telling you nerves don't regenerate. Getting some relief for her symptoms is a starting point. There is no cure for neuropathy but there are many different treatments that may help and make life better.

You mentioned your daughter was seeing a specialist in a bigger city. Is the doctor a neurologist? Has she been given a specific diagnosis?

REPLY
1 reply
asd | @asd | Jul 19, 2022
In reply to @johnbishop "Hello @asd, Welcome to Connect. I can't begin to imagine how difficult it must be for..." + (show)
@johnbishop

Hello @asd, Welcome to Connect. I can't begin to imagine how difficult it must be for you or your daughter. I'm glad you are able to advocate for your daughter and are looking for information on neuropathy. Learning as much as you can about her condition can be helpful to know what treatments may be available. Here are my favorite sources for learning more about neuropathy and possible treatments.

-- Neuropathy Commons: https://neuropathycommons.org/index.php/neuropathy/neuropathy-overview
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/

Don't be discouraged by the doctors telling you nerves don't regenerate. Getting some relief for her symptoms is a starting point. There is no cure for neuropathy but there are many different treatments that may help and make life better.

You mentioned your daughter was seeing a specialist in a bigger city. Is the doctor a neurologist? Has she been given a specific diagnosis?

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Thanks for replying. My daughter is seeing a neuorologist of 30 years in a clinic called Physiatry (?) which I've never heard before. And no diagnosis even after all the tests that are available including asbestos, lime, and all the RA, GB, ALS, MS, etc. One is left which is a biopsy and should be done soon.

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