[lynn01]

I have sensory-motor neuropathy and was wandering if the numbness and sensations can come and go throughout the day. One minute my legs will be mildly numb from my foot to above the knee and then it will be hardly noticable the next couple of hours. I don't notice it as much when I am moving around, but when I'm sitting or lying down for a period of time I do. The sensations are worse when I first wakeup in the mornings. I do have a hard time standing for extending periods of time in one spot, it causes my back and hips to hurt. It's like a burning sensation in the muscles of my back, hip and thigh area. Does anyone else experience this?

[athena]

Originally Posted by lynn01

I have sensory-motor neuropathy and was wandering if the numbness and sensations can come and go throughout the day. One minute my legs will be mildly numb from my foot to above the knee and then it will be hardly noticable the next couple of hours. I don't notice it as much when I am moving around, but when I'm sitting or lying down for a period of time I do. The sensations are worse when I first wakeup in the mornings. I do have a hard time standing for extending periods of time in one spot, it causes my back and hips to hurt. It's like a burning sensation in the muscles of my back, hip and thigh area. Does anyone else experience this?

I am not diagnosed with anything yet, other than paraneoplastic vasculitis. The autoimmune vasculitis was found on muscle biopsy and seems most consistent with a paraneoplastic process. The paraneoplastic part has not been confirmed or ruled out. It's been a really long process getting testing approved, etc. But I digress.

I was going to ask a similar question of my rheumatologist when I see her on Tuesday. Is all this weird stuff that comes and goes neuropathy, or what? When I'm moving around I have weakness after a bit. When I stand for more than a few minutes in one position my pelvis starts to feel unstable, tilting back and forth, and I have to steady myself by touching something, so I try not to stand talking with someone unless there's something nearby to rest on. I take a walking stick when out walking. The tinglings, burnings, and numbness move from body part to body part from day to day with periods of no sensory weirdness. Like you, I feel the sensory stuff only when not moving around. When I wake up in the morning I just ache from my skin to my marrow. Usually the ankles and/or hips are wobbly when I try to get going from getting out of bed. After some movement those feelings go away. And, for the first year of this disease process I had only exertional weakness, no sensory stuff.

Is this neuropathy if it comes and goes like this? Is it related to the vasculitis?

How was your sensory-motor neuropathy diagnosed? I'm wondering if I should ask for a repeat of the NCV and EMG that I had done a year ago which were negative.

Athena

[invisable]

[QUOTE=athena;724853]I am not diagnosed with anything yet, other than paraneoplastic vasculitis. The autoimmune vasculitis was found on muscle biopsy and seems most consistent with a paraneoplastic process. The paraneoplastic part has not been confirmed or ruled out. It's been a really long process getting testing approved, etc. But I digress.

I was going to ask a similar question of my rheumatologist when I see her on Tuesday. Is all this weird stuff that comes and goes neuropathy, or what? When I'm moving around I have weakness after a bit. When I stand for more than a few minutes in one position my pelvis starts to feel unstable, tilting back and forth, and I have to steady myself by touching something, so I try not to stand talking with someone unless there's something nearby to rest on. I take a walking stick when out walking. The tinglings, burnings, and numbness move from body part to body part from day to day with periods of no sensory weirdness. Like you, I feel the sensory stuff only when not moving around. When I wake up in the morning I just ache from my skin to my marrow. Usually the ankles and/or hips are wobbly when I try to get going from getting out of bed. After some movement those feelings go away. And, for the first year of this disease process I had only exertional weakness, no sensory stuff.

Is this neuropathy if it comes and goes like this? Is it related to the vasculitis?

How was your sensory-motor neuropathy diagnosed? I'm wondering if I should ask for a repeat of the NCV and EMG that I had done a year ago which were negative.

He would repeat NCV & EMG only if symptoms changed. I do not have too many motor symptoms other than some muscle fasciculations. I am all about sensory. If I were not on my Gabapentin, I would have a sensation of some variation every second, I mean literally, every second. With 1200 mgs. of Gabapentin, I have about 25-30 sensations a day.

I have a blood test scheduled for Dec. 28th for a paraplastic panel and some blood cancer marker tests. Dr. said it is a very slim chance, but I insisted on testing.......slim doesn't mean no chance and I have no answers now so I might as well exhaust every test there is out there!!

[lynn01]

[QUOTE=athena;724853]I am not diagnosed with anything yet, other than paraneoplastic vasculitis. The autoimmune vasculitis was found on muscle biopsy and seems most consistent with a paraneoplastic process. The paraneoplastic part has not been confirmed or ruled out. It's been a really long process getting testing approved, etc. But I digress.



I had a NCV and EMG test done, the NCV results showed damage to my sensory and motor nerves with demylinating and axonal features involved. There was slowing of ncv of my left peroneal nerve (my right peroneal had no response) there is slow ncv of my left and right sural nerves, and my left tibial nerve has prolonged responses. All my F-waves are prolonged with the right peroneal having no response. I also have absent DTR's (reflexes of both ankles). My EMG was normal. He did a blood workup for diabetes, hypothyroid, folate, B12, paraprotiens, he ran a sedemation rate to check for inflammation, ect. All my lab work came back normal. The neuropathy is affecting both of my legs. I do have weakness along with the numbness and odd sensations. For right now he has me listed as idiopathic, which mean of unknown cause. I had the test done in July, he is probably going to do another NCV in February to check for any improvement or progression. NCV shows only large nerve fiber involvment. If its small fiber they have to do a skin biopsy.

[mrsD]

Please find out your values for the B12. "normal" really means nothing, since the lower ranges in labs in US report very low numbers as "normal". If you are under 400, be concerned.

And I won't even go into "normal" thyroid either... since I had "normal" for years, being really hypo, and only a scan revealed it. (even when my goiter was very obvious!).

[Hermes]

Originally Posted by lynn01

I have sensory-motor neuropathy and was wandering if the numbness and sensations can come and go throughout the day. One minute my legs will be mildly numb from my foot to above the knee and then it will be hardly noticable the next couple of hours. I don't notice it as much when I am moving around, but when I'm sitting or lying down for a period of time I do. The sensations are worse when I first wakeup in the mornings. I do have a hard time standing for extending periods of time in one spot, it causes my back and hips to hurt. It's like a burning sensation in the muscles of my back, hip and thigh area. Does anyone else experience this?

Sounds really familiar. If I stand still for any length of time I get burning in my thighs and up into the hips and lower back also. If I walk any distance I end up in real pain. For just sitting at a desk or on the couch the sensations change, sometimes bad pain, sometimes weird sensations that don't hurt but are somewhat disconcerting.