[rockenmama]

Anyone else have issues? I'm in a rehab hospital the only concrete diagnosis I have at the moment is SFN however with the changed in my last EMG and the fact that I'm very debilitated (wheelchair) I'm at a loss . When I was first diagnosed eith SFN in 2013 the neurologist said it would just be sensory. Ummm I've been dealing with problems with my aunotomic system for the past 6 months snd have been dealing with weakness for sometime now and it's gotten progressively worse. I was an endurance athlete just 2 years ago (ultra runner) Anyway having MAJOR problems with co contractions during therapy and I'm wondering if it toes in to the possible progression of my SFN., because from what I understand PURE sensory SFN does not caus problems with proprioception

[Jomar]

Since these changes , have you had a new work up , or with a new dr?
Don't settle for a single dx that maybe not be right , or could be a separate new condition..

I would seek another opinion totally separate from the current dr.

Perhaps even a expert chiropractic assessment..
Have you had recent MRI of the spine and brain? Just to check for any other causes?

Acupuncture?

[en bloc]

I have major proprioception issues and have had numerous falls from just simply looking up (away from my feet) and losing the sense of where they are at. You absolutely HAVE TO pay attention and move slowly to ensure you are placing your feet correctly to avoid falls. If it affects your ability to drive, then you need to stop driving at all. What are your symptoms?

One of the reasons my IVIG was increased to neuropathy treatment levels was not for reversal of neuropathy damage (as mine is considered permanent), but instead for slowing progression and specifically hoping to improve some aspects of my neuropathy, to include proprioception. Of course, it is hard to confirm whether or not it is helping this particular part of my neuropathy, but I have only had one fall in the last 6 months...and that is a VERY big improvement for me.

Have they tested your proprioception (fingers, toes, hands and feet)? How far up do you test positive (toes, ankles, knees, etc.) What about the Romberg's test...do you fall with eyes closed?

Some people can be helped with physical therapy...there is specific training for proprioception skills. Have you tried this?

[February]

I think maybe large sensory are involved now. There are both large sensory and motor fibers. Emg/ncs can see large sensory fiber damage but not small sensory fiber loss.

I have all 3, large and small fiber sensory and motor.

There were times when I couldn't tell when they were holding my toe up or down, and sometimes I couldn't feel them holding it at all. It felt like my arm was over there??? It also felt like my joints were bent in unnatural positions. Thankfully, it has improved.

I would have to look at the ground to walk. My gait was bad because I had forgotten how to position my step. With motor fibers it is hard to step regardless of how it does or doesn't feel. They are completely different. I also, would fall if I closed my eyes or walked in the dark. Physical therapy was critical. I learned how to position my step and improve my balance.

Reflexes are a good indicator of motor involvement.

Are you able to walk with a walker or if you look at the ground?

[rockenmama]

Originally Posted by Jo*mar

Since these changes , have you had a new work up , or with a new dr?
Don't settle for a single dx that maybe not be right , or could be a separate new condition..

I would seek another opinion totally separate from the current dr.

Perhaps even a expert chiropractic assessment..
Have you had recent MRI of the spine and brain? Just to check for any other causes?

Acupuncture?

I've had major work up. I've gotten 6 IVIG treatments since Jan and this last one they waited and did major work up before the Treatment including lumbar puncture. I am having a cat scan of chest abdominal and pelvis area looking for cancer. I'm being referred to Hopkins from a very well respected teaching hospital. As far as a chiropractor ,they won't touché with a ten foot pole note would I let them (2 level cervical ACDF which is and had been stable since after surgery)

[rockenmama]

Originally Posted by en bloc

I have major proprioception issues and have had numerous falls from just simply looking up (away from my feet) and losing the sense of where they are at. You absolutely HAVE TO pay attention and move slowly to ensure you are placing your feet correctly to avoid falls. If it affects your ability to drive, then you need to stop driving at all. What are your symptoms?

One of the reasons my IVIG was increased to neuropathy treatment levels was not for reversal of neuropathy damage (as mine is considered permanent), but instead for slowing progression and specifically hoping to improve some aspects of my neuropathy, to include proprioception. Of course, it is hard to confirm whether or not it is helping this particular part of my neuropathy, but I have only had one fall in the last 6 months...and that is a VERY big improvement for me.

Have they tested your proprioception (fingers, toes, hands and feet)? How far up do you test positive (toes, ankles, knees, etc.) What about the Romberg's test...do you fall with eyes closed?

Some people can be helped with physical therapy...there is specific training for proprioception skills. Have you tried this?

I get the IVIG because of weakness. I've tested positives up to my knees. They don't deal with vestibular therapy here (in sub acute rehab/nursing home) I've done that before and know the benefits but got to get what's going on with legs that's causing the co contraction under control first. Having muscles working against the ones that need to work is exhausting them so no endurance

[rockenmama]

Originally Posted by February

I think maybe large sensory are involved now. There are both large sensory and motor fibers. Emg/ncs can see large sensory fiber damage but not small sensory fiber loss.

I have all 3, large and small fiber sensory and motor.

There were times when I couldn't tell when they were holding my toe up or down, and sometimes I couldn't feel them holding it at all. It felt like my arm was over there??? It also felt like my joints were bent in unnatural positions. Thankfully, it has improved.

I would have to look at the ground to walk. My gait was bad because I had forgotten how to position my step. With motor fibers it is hard to step regardless of how it does or doesn't feel. They are completely different. I also, would fall if I closed my eyes or walked in the dark. Physical therapy was critical. I learned how to position my step and improve my balance.

Reflexes are a good indicator of motor involvement.

Are you able to walk with a walker or if you look at the ground?

I have both large and small motor units on EMG but the small were isolated to the iliopsoas.
I'm working on the walker. I've gotten 34 feet ,but they half to wrap my feet and calves so that I'm not walking over my feet so much and to help ease things on my upper body since I use it way more than I should. Someone asked about driving , this had robbed me of that. Whatever is going on had gotten insidious and I wouldn't wish it on my worst enemy!

[February]

Since there is motor involvement and if the cause is inflammation from an immune problem, its important to know that the therapists should be careful not to overwork you. Inflammatory immune is not treated the same as a structural problem. The "No pain, no gain" does not apply. I'm afraid with your endurance training background you may overextend which can be a detriment. I was overworked in rehab and it took many months to reverse the damage.
We had to measure the strength of my muscles every day. If I lost muscle strength we scaled back. I worked 10 minutes on and 10 off during the sessions and was very careful not to overwork any one muscle group. I could also gage by how tired I was after each session. If I slept more than the "benchmark" that was also an indicator to scale back and do more passive therapy. The most important thing is to keep your range of motion until they settle on a treatment plan that stops the progression. Passive therapy is very effective.

A pair of boots may help support your gait in the meantime so you don't trip and hurt yourself.

[rockenmama]

Originally Posted by February

Since there is motor involvement and if the cause is inflammation from an immune problem, its important to know that the therapists should be careful not to overwork you. Inflammatory immune is not treated the same as a structural problem. The "No pain, no gain" does not apply. I'm afraid with your endurance training background you may overextend which can be a detriment. I was overworked in rehab and it took many months to reverse the damage.
We had to measure the strength of my muscles every day. If I lost muscle strength we scaled back. I worked 10 minutes on and 10 off during the sessions and was very careful not to overwork any one muscle group. I could also gage by how tired I was after each session. If I slept more than the "benchmark" that was also an indicator to scale back and do more passive therapy. The most important thing is to keep your range of motion until they settle on a treatment plan that stops the progression. Passive therapy is very effective.

A pair of boots may help support your gait in the meantime so you don't trip and hurt yourself.

Ya we're still trying yo figure things out. I definetly over did it yesterday as I am very tired and weak already and it's just going on 10. I talked to my OT about priorities. I may end up going home not walking.

I do everything WITHOUT shoes. I need as much feed back as possible so I end up in my skid socks though I need my husband to bring my Vibrams ( toe shoes) I want to get home ASAP but want to make sure that my legs get the work they need and don't get neglected. We've been focusing on legs do much