New test results…
AnonymousMarch 31, 2007 at 11:35 am
I went back to my neurologist on Thursday and he re-did tests (the electric-shock ones and the pin-against-the-nerve ones…sorry for my lapse in memory of the medical jargon for these tests)… He chose the hand/arm and foot/leg that had the most severe demylenization and seemed pretty amazed at the results… Since August of 2005 when he first did the tests there has been between an 80% and 90% improvement…. I know that I am a lot stronger (can climb stairs, open door locks, tie my shoes, etc) but I still have some residual symptoms… I get pins and needles in the hands and arms with overuse, sensitive fingertips, cannot stand in one place for longer than a few minutes, and am easily fatigued… I also am still getting the creepy-crawly feelings up my back… I guess these are left over from the original attack… I wish I had asked….he seemed to understand when I told him what was still going on with me… I guess if my myelen is 80% – 90% better that I would expect for the above to be 80% – 90% gone… but it is not… I always think of these questions after I have left his office… :confused:
AnonymousMarch 31, 2007 at 12:09 pm
That’s EXCELLENT news!
It means that you still have CIDP but the attack has stopped on your nerves & you are improving!
You may always have the residuals but those are nothing compared to being able to walk, right?
Here’s to your myelin continuing to recover!
AnonymousMarch 31, 2007 at 3:18 pm
Congratulations!! How terrific! Whatever you and your neuro did, it was exactly the right thing. It is so encouraging to hear good news like yours. I’m rather new to all of this (dx 10/06), so I’m reading everything and everyone on this site to try to understand CIDP. Keep up the good work! Good luck and good health!
AnonymousApril 1, 2007 at 1:01 pm
Wonderful news on your progress. Here’s an explanation of the 3 types of peripheral nerves. It sounds like the tests your doctor performed measured the response for motor nerves. Sensory nerves are responsible for the residual symptoms you are describing – hopefully, they will also show improvement in time. Mabe next time you see him, you can ask about how the progress of these nerves can be measured.
best wishes on continuing success
AnonymousApril 1, 2007 at 4:31 pm
Thank you, Kelly and Dee Dee… And Compact Disc….what a neat article…!!! Are the nerves like totally separate or do they bundle together, sharing the same myelin..??? Do you have any other articles like this one that you would share..???
I have never had the sensory problems of not being able to tell hot from cold… And the pin and shock tests definately hurt, but I wonder why I have the other sensory symptoms…pins and needles if I use my arms too much, sensitive finger tips, etc… The more I learn, the more I want to know…
Thanks everyone… 🙂
AnonymousApril 1, 2007 at 6:20 pm
There are thousands (millions??) of nerves in the body – each one is covered w/protective myelin.
Here’s a fun page you can use to find out which nerves are causing problems – for example – click on the “sural nerve” and the part of the body that is affected by this nerve is highlighted. In my daughter’s case, this is the nerve that most probably contributed to her foot-drop (Motor nerve from the spinal cord to the muscle). I visualize a feedback nerve from the muscle to the brain that made it “feel” like she was walking on broken glass/sharp rocks. (sensory nerves) Often, she would not be able to sleep from burning sensations in her feet, and so I am guessing that both motor and sensory nerves had myelin damage. Hope this explanation is not too confusing. Here’s the link:
AnonymousApril 2, 2007 at 12:00 am
Oops – my last post not technically correct: most Axons (nerve fibers) are covered w/myelin, and as bundles are refered to as nerves.
Here is a course for medical students on neuropathology – click on the pictures to enlarge to see the individual axons in a nerve segment. Good discussion of GBS/CIDP/CMT half way down.
AnonymousApril 3, 2007 at 12:34 pm
I’ve experienced essentially the same thing you have. When I was finally diagnosed w/ CIDP in July, I could barely walk, couldn’t rise from a seated position, and my hands/arms were becoming useless. The IVIG worked miracles on all of those (motor) problems. I continue to get 1 infusion regularly (first every 4, then 5, now 6 weeks). Each time my neuro measures my strength, it gets better. But the sensory symptoms — numbness in parts of feet, burning/tingling soles of feet, crawly feeling in calves (what I call “microtwitches”), extra sensitivity — all have remained the same. I’ve even developed some new problems, like hand tremor and vision problems. But as annoying as all that is, it truely is great to be able to walk steady and faster, stand up, climb stairs, open jars — all that stuff that I had lost. I’m hoping for both of us that evenutally some of these sensory symptoms also will improve or at least stop progressing. Best wishes,
AnonymousApril 7, 2007 at 8:55 am
Aimee, no you cannot put strain on sensory nerves or motor neves, the concept does not exist. Muscles fatigue because of delay in removing waste products and in oxygen supply. Nerve testing is very innaccurate and non-specific. There is very little relationship between laboratory based conduction tests and real life function. You have done very well and may have to accept some residual discomforts. DocDavid
AnonymousApril 7, 2007 at 12:02 pm
ok, i’m lost. maybe we’re just not talking apples & apples, but if one can not put a strain on nerves, why do we say nerves need rest to heal? and rest when are residuals get to be more than we can cope with? beyond that, this resting has been effective time & time again. can someone put me on the straight & narrow? thx. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousApril 8, 2007 at 12:12 am
Congratulations !! This is great news. I hope things continue to go well for you. I remember a couple of years ago (Or so it seemed) that it was pretty rough.
It is always easier to deal with anything now, after you have overcome the past !!
AnonymousApril 8, 2007 at 2:16 am
[QUOTE=gene]ok, i’m lost. maybe we’re just not talking apples & apples, but if one can not put a strain on nerves, why do we say nerves need rest to heal? and rest when are residuals get to be more than we can cope with? beyond that, this resting has been effective time & time again. can someone put me on the straight & narrow? [/QUOTE]
Rest helps the body heal. You’re resting the body, not specifically resting the nerves. How would you rest a sensory nerve, anyhow? Or autonomic nerves? The strain you are avoiding when you take extra rest is not strain on nerves in particular, but strain on the resources of your body in general, resources which then can be used for healing.
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