Saw neuro surgeon yesterday for severe back pain, havent seen my neuro (will next week) cause they all agree there is nothing can be done (heriditary PN and autonomic).... so hadn't had my reflexes checked in almost a year... they are gone - everywhere except one tiny response in one knee - nothing else in feet, legs, arms, hands, etc.. also I thought I was weaker cause of recent severe intestinal infection and then agressive surgery... no, extreme weakness on testing due to the nerve damage...... the doc would operate on normal person to get rid of some of the back pain, but says I wont be moving soon at all... so wont matter, and I agree, I'm not going thru surgery like that for nothing... anyone else with complete loss of reflexes and strength? I've been using wheelchair for years but can ambulate a bit inside holding onto walls etc, but so weak now cant even get up on a stool.

Those with PN's that affect your reflexes, have you found this normal? Any suggestions on building some mucle strength. The doc has ordered another MRI on back to see if we can do some kind of exercise to decrease pain there as its so bad. Anyone have their relfexes return? (NO, IVIG does not work for me, had large dose every week for a year and a half and was a big waste of time of money)???????

I am sorry you have this now to contend with!

I had some loss of reflexes in the knee and ankle when I had my thyroid testing. They returned with hormone supplements.

My PN has not progressed (lucky for me) since then. In fact it is pretty stable for me now. My balance is a bit off...but that might be due to my inner left ear problem and my left leg tendon weakness.

I did notice this summer that when I got off the boat and lay down, I felt like I was still moving. Looking out the window laying down, the tree trunks moved a bit from side to side for about 1/2 hr. I don't know what that means, perhaps some inner ear problem still? (I have low had function of my left auditory nerve for most of my life, since tests in my mid twenties).

How is this different than the 'land legs/sea legs' effect?
I always had this happen after being on the boat for the day,
even after years of boating. It happened standing or lying down.
I usually felt it most, immediately when getting off the boat and walking on the dock. It always took about 15 mins to 1/2 hour, to settle down.

Hubby thought it was what you are thinking. It was just after that one terrible docking dangerous docking we did, that I went to lie down right away. I've never done that before. But I was overwrought and after a long day, was tired and needed to lie down for a while. I face a window and looked out and the tree trunk was moving left and right!

We are only on the boat for 1/2 hr tops, and I didn't think that was enough to induce the "sea legs" phenom?
It is a small pontoon BTW, not a sail boat.

As long as you get any boat rocking sensation,you acquire sea-legs
(or seasickness-take your pick) doesn't matter how small the boat is
(actually the bigger the boat, the less motion) or on a lake or river or the ocean (ponds have the least).
Pontoons are quite stable, but they still have motion of pitch & yawl
and still rock in the wakes of other boats, too.
It still can take a while before you get your land-legs back. The longer you are on the boat, the more time it takes. We used to go out for a week or 10 days (our 25' sloop had a head, & galley- and slept 4 or 5, nicely).and only got to shore every 3rd or 4th day. Maybe twice or 3 times during the whole vacation. We would 'gunkhole' on the Chesapeake Bay and sleep and cook on board. I'd be 'rocking' on land for an hour or more when I went ashore.

My reflexes can come and go, depending on whether or not I have a significant palsy or not. My legs and arms can go completely dead very easily, but so far they've come back, but there has been slow accumulative damage, that's what HNPP does.

Strangely I can have very brisk reflexes when I do have sensation and motor strength. Which really seems to puzzle the Neuros. I think HNPP might be an exception. Usually it takes a long while for reflexes to return after injury. I know that many with CMT which is a Motor-sensory neuropathy (as is HNPP) often describe muscle weakness with continued missing reflexes.

My son has permanently lost ankle reflex and the others are diminished. But presently he gallops around without a care. He's well in his 20s.

"I did notice this summer that when I got off the boat and lay down, I felt like I was still moving. Looking out the window laying down, the tree trunks moved a bit from side to side for about 1/2 hr. I don't know what that means, perhaps some inner ear problem still? (I have low had function of my left auditory nerve for most of my life, since tests in my mid twenties). "

Mrs.D - I've had that problem my whole life too - but ears were ok - when I got off an elevator I felt like I'm hopping up and down inside (if that makes sense) - and since I've worked on the very top floors of several high rises, very irritating) - have less of a problem with boats, feeling lasted only a few minutes if out all day, but even stuff like skating - used to feel like my legs were still moving for a while after... now of course with no propeciation its moot - but I'm wondering if it was a warning of what was to come with a heridiatary PN..... do those of you with CMT or other inherited PN have complete loss of reflexes?

I don't but I'm sure a person could have in time as it progresses and the type that they have. For example; deep tendon reflexes.

I don't know but for me and I have not allowed a doctor to take them lately cause it causes too much pain mine seem to vary. I think it is from being so tense as I can't relax when I know it is going to hurt. I am not saying this is you and who knows with me. It may not be from tension. I am glad your doctor ordered another mri. What about emg/nc does that test again to see progression?I wish I had more ansers for you. Have you ever tried pool therapy or been suggested it? I just suggest that cause I have been thinking of it again and out of all the PT type things I hear the best about the pool. Of course go with your doctor suggestion and your body. Sending thoughts

Hi Daniella - the MRI is for my back only - pain from degenerated disks - started way after the PN - which is body wide and ncs/emg's showed mostly no nerve conduction for many years now (havent had one in two years now - they dont think necessary any more)... and sural nerve confirmed - too much axon degeneration for anything to come back nerve wise - the back pain I'll see what he says about maybe the pool after the MRI - its excruciating and I cant take anything but tylenol for it - gotta find some relief there somewhere.... regular PT has proved usuless - they have tried several time - because it just causes severe PN flares!