[daniella]

Most know my major issue is in my left inner ankle/foot/calf. A few months ago I had it for a brief period in my righ in the similar areas and felt like I couldn't propel with my right. Well the past 3 days my right is in so much pain too and in the same areas. I have been pushing more and doing so much on my feet in the past week as the docs said I have to do as much activity as I can handle. I have been putting a lot of pressure on the right to take some off the left. My docs want to treat my pn like rsd. The last doc said something about the pn in both. So can some explain more the results and is it truly similar in both legs just the left worse? Thank you.

Nerve conduction studies were obtained following posterior tibial motor,peroneal motor and sural sensory nerve stimulation. There were prolongation of the distal latency of the right peroneal and bilateral conduction velocity slowing 22.8 meters per second right,35.9 left. Sural latencies were intact following right sided stimulation,boderline latency on left with conduction velocity slowing 35.2 meters per second. This was an abnormal study consistent with a bilateral sensory motor neuropathy. These findings should be clinically correlated.
Somatosensory evoked potential(SEP) were obtained following posterior tibial nerve stimulation at the ankles. Following stimulation of either side,well-formed and reproducible popliteal fossa,lumbar and cortical potentials were seen. There was mild prolongation of the L3 response. There was shortening of the left L3-Lp37 interpeak latency. This is an abnormal study consistent with conduction delay subserving the sensory pathway of he left lower extrmity between the popliteal fossa and lumbar cord. The finding should be clinically correlated.

[LizaJane]

But I just popped in and saw your note. So I guess you can take the RSD off the menu. You definitely have sensori-motor neuropathy. It's time to pursue all the causes of it, so this is where you either use the lizajane charts and make sure you get all the tests, or trust your neurologist, or, at the very least, Athena. (Though they do not have everything that should be checked.)

I do wonder if you have Charcot-Marie-Tooth. Have you checked on their boards to match the rest of your history?

[daniella]

Yes I have had every test and that Charcot was ruled out. My last doc said I have had every diagnostic test and the only thing left is to chop the leg off. I like many here are having a hard time. Finally after months I see progress in the left. It is ainful still but at least progress. Now my right leg which only happened a few times during this issue but not this pain level or for this long is horrible. So I was wondering if they test did show it in both legs? I wish docs would explain more. I ask but I never get a direct answer. I'm going to go to u of m pain clinic I think after I meet with the anastesogist from there which was recommended from the one I saw in Oh. Maybe he can give more options other then the catheter. Can anyone tell me why my issue would be treated though similar to RSD?

[dahlek]

I'd bring a copy of those tests for the doc to keep or not [just be sure you keep your originals!] and ASK right out WHAT DOES THIS ALL MEAN? I don't know about you, but I'm not anywhere near being a neuro-diagnostician....
Can someone please PLEASE explain to me what I DO have or might have rather than what I don't have? And, then, what do I have to do to get tested etc and get better?
Honesty gets you lots farther faster than anything, especially with doctors who have ''heard it all"?
It's clear you want to learn and understand what all has been happening to you, it's also clear that you have been trying hard to 'go with their program' even when in that state called PAIN. You either get a surprised look and answers or a surpised look and be put off....So every doc you see after this, ASK! But, be careful what you ask for...you mite get much more of an answer than you can asorb all at once! That HAS happened to me! I sat there with my jaw dropped and listening and writing furiously on that note pad I always bring,, of course, the pen wouldn't work rite [durn it?]
Hope this helps - hang in there - good things are going to happen - j

[LizaJane]

Daniella, I've been in this community for years now, and even now, I can't say I've had ALL the tests, because medical knowledge is always growing.

I have some standard, Liza Jane advice for you: Collect all your records. Have every doctor you've seen fax "every test" was done. As for your doctor being so sure he's ruled out Charcot Marie Tooth, I'd want to know just how he did this. There are a multitude of genetic tests for it, and I wonder which he did.

You wonder if both sides are involved. But you also wrote this:

"Nerve conduction studies were obtained following posterior tibial motor,peroneal motor and sural sensory nerve stimulation. There were prolongation of the distal latency of the right peroneal and bilateral conduction velocity slowing 22.8 meters per second right,35.9 left. Sural latencies were intact following right sided stimulation,boderline latency on left with conduction velocity slowing 35.2 meters per second. This was an abnormal study consistent with a bilateral sensory motor neuropathy."

According to what you've written, you have bilateral disease.

What catheter are you talking about? I don't know of any tests requiring a catheter and I'd be interested to hear.

Please go to lizajane.org and download the test lists. Bring it with you to your doctor and ask if you have had all the tests.

It does not sound like a small fiber neuropathy, however, it sounds like a large fiber, post-ganlionic type thing, (the conductions were slowed from your knee to your spinal cord), and those are often immune. So you ought to get all those antibody tests, and maybe a spinal tap. (Ask Melody about that!)

[dahlek]

She is one of us who happens to be smarter than the rest of us about some of this stuff. She is right on target! Go, get copies, Do, and Ask.
's a plenty - j

[shiney sue]

Please listen to these lovely ladies,remember how you spent so much
time in bed for fear of doing more harm. Well that's understandable
you were in pain. But as you know now,you were getting dizzy spells
we were not make to stay flat,unless we have no choice D. no matter
how much you hurt you must move.. Now i have had some problems
and they have been very serious,but in my sweet Sue ways i asked
questions of everyone,over and over. To the point of of some Drs.
hair falling out,and that can irritate some of the lady Dr.s the most.

You must be tested from the feet up,slowly,be patience because unless
there is a cure in the next 10 mins. that's the body your going to have
to deal with. You do not want those painful ankles laying flat, to one
side and not be able to staighten them up no matter how hard you
try,watch the muscles waste away. When those ankles get that way
more pain will come, you legs will be pulling in the wrong direction,you
knees with hurt like your 100 years old and been peddaling a bike for
days. You will look and think who legs are these. And D. it goes up.
My Neuro always points out how i keep my fingers apart to the Med
Students,Sue does this because if her fingrs touch the pain is unbearable.
Listen honey get up,move as much as you can and stay up as long as
you can. Now i will sound like a PT but learn to desensitize your body
the best you can, but allow the rest you need and learn as must as you can
i don't write well enough anymore,so if nobody is with me i tape record,
if a Dr. doesn't like it well goodbye. I call ahead and get permission,so
as not to waste time,never been told no.

I'm tired now but read LJ progrem untill you learn it forword and backword.
Don't let a Dr. get away until your question is answer. And tests,tests
compair them carefully. Sometimes i get tired of being told your so
strong,we must be because we only go around once. I'm 60 don't
want to give up yet,oh yes i have said enough,i don't want to live like
this. Those are words,do i cry ,yes but i have to much to see and do yet.
Now this just might cut the leg off,you must do everything to never
hear that. Your young and afraid but we all are afraid on all of these forums.
Well my hands are screaming and so are my wrists and neck. Read the
forums look how many people do and and never post,well you did
and what we do is support each other. D. keep moving and know your cared
about we are not your Aunt or Uncle who have to like you,we do. Dangg
that's enough i'm through please have a good night and wigggle and
strectch those feet on up before it really does get to hard. Having
a Jewish grandfather,you will understand how funny it is to have pig skin
on my leg. But honey you got to understand you don't want it. Sue

[daniella]

Thank you. Trust me I have learned so much from you all. The last apt I was at after the doc I told not to touch me and did I thought of all of you. I didn't allow it. I have asked and they said pn is usually in both but worse in another. Also it will feel like I'm doing damage or it won't move but it will. Lizzajane I'm sure I haven't had every test but all the docs I have seen feel the ones I need and I have asked for extra which they did do. The catheter is actually a tunneled epidural catheter and its just for pain relief so I can do a very extreme pt. Like many said they don't want it to athrophe. I have been pushing and now am out of bed full days most days. Even through the severe pain. I don't want to go backwards but now with both legs its a real challenge and the come and go neck/dizzy. I have all my records which I just sent to u of m now hospital pain clinic/anasteseogist to see if they have something other then the catheter though I may wait to go to this apt. As for that disease I think it was through the extensive blood work but I did not have a spinal tap. I think since all my mris didn't show anything from the spine that may have been why and no other symptoms of that disease. I could be wrong but one of the neuros thought it may have been an auto ammune issue so did a few extensive tests and sent me to the endocronolgist.Could you tell me why they want to treat it like RSD? Dahlek thanks I do want to learn but a lot of what is going on with me they have no answer which I know some can relate to. Also that I'm willing to push but also I see that they will push to far and even the doc said we want to see how far you can. The issue is the pain is not only that day but days after. Shiney Sue your so sweet and I like all of you more then most of my family. Your like my adopted family. Its funny how people who suffer have such a special heart. As I move more I remind myself it has to hurt like when you see others on tv in rehab you can see the pain in there face but in the long run makes it better. I'm sorry for all your suffering too. Thank you times a billion for all your support.

[shiney sue]

you have never had a spinal tap,huh what Neuro's love those things,
and for good reason's,i just don't understand. That's something most
Drs. insist on,you should as well. UOM is a very good place,keep on
pushing to get in. And mostly keep moving,going to make a trip to
Mi. in the future,we will go dancing and make fools out of ourself's.
But you have to dip after all your younger!! Sue

[LizaJane]

Call your doctors and get the results of your lab tests. You very well might have something immune going on, and it's important to know they'v done all the right antibody tests.

And if nothing has been found, a spinal tap might show an elevated protein, which is a sign of immune disease.

You need a diagnosis more than an intervention for pain. Get up, walk, move around, don't let yourself atrophy, but also, advocate for yourself and keep copies of your labs.

You need to be the one in charge of knowing when enough testing is done.