How bad can it get....weakness.

Lerch · 02-20-2019, 02:56 PM

I've had a dx of axonal pn for about 7 months now. I've gone from no detectable weakness to significant weakness/some difficulty walking in that time. Does anyone know how bad this can get? Anyone know anyone paralyzed or in a wheelchair from weakness (not pain)? Sorry to be a Debbie Downer, but I'm afraid that is in my future...Thanks....

echoes long ago · 02-20-2019, 11:09 PM

ive had large fiber axonal sensory motor pn for 18 years now and im not in a wheelchair or paralyzed.

Lerch · 02-22-2019, 02:59 PM

Thanks for the response. I've had a significant increase in upper leg weakness in the last month or two, seems pretty rapid...I'm glad you've had a slow progression...Do you have weakness in the thighs or hips?

echoes long ago · 02-22-2019, 06:23 PM

yes i do and for quite some time now....years.....my legs, arms and hands also fatigue easily and my legs become quite heavy climbing stairs, walking up hill etc. but i still can walk, drive, and walk up stairs. the most noticeable weakness to me is when i sit, it is very hard to raise my legs straight up, with the knees bent. very few people wind up in wheelchairs from PN and less become paralyzed or bedridden.

Lerch · 02-23-2019, 12:46 AM

Can I ask if your weakness progressed steadily, or did it start with noticeable worsening, then level off, or some other pattern? I could walk, do work around the house, walk up stairs all perfectly normally in November, but now stairs are noticeably more difficult, less muscular stamina walking, and I feel like I've had a muscle workout after modest work, with little recovery later.

echoes long ago · 02-23-2019, 01:33 PM

Quote:

Originally Posted by Lerch

Can I ask if your weakness progressed steadily, or did it start with noticeable worsening, then level off, or some other pattern? I could walk, do work around the house, walk up stairs all perfectly normally in November, but now stairs are noticeably more difficult, less muscular stamina walking, and I feel like I've had a muscle workout after modest work, with little recovery later.

the muscle weakness in my legs and feet leveled off after a few years....lately the weakness in my hands and arms is worsening as those areas PN progress. The numbness in my feet and legs has steadily progressed throughout the 18 years ive had PN. Now in the last 2 years it is progressing in my hands and arms.

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