- This topic has 5 replies, 6 voices, and was last updated 14 years, 11 months ago by Anonymous.
May 30, 2006 at 2:40 pm #2874AnonymousInactive
I’m becoming a “doubting Lizzie”. When I was first diagnosed (1998) after all tests were done, the neurologist told me little or nothing at all. It took me awhile to find a really good doctor that I had faith and confidence in. I remember asking him if I had axonal damage and now “doubting Lizzie” appears, I think he told me I had little or none. He was just going by tests he had made though, he never looked at the charts I still have from the neurologist who diagnosed me.
I am recovering and I do believe that I am healing, but the improvements and increase in strength are moving like a sluggish snail. This is why I’m wondering if I did have axonal damage, because I know you recover much slower.
How would I know if I had axonal damage?
May 30, 2006 at 9:46 pm #12131AnonymousInactive
I go by how my body feels or is doing, rather than what I am told by the doctors. Back in June of 2002 I was inpatient at Mayo, after I had been virtually paralyzed by CIDP since April 27th of 2002. I had already had my Dx changed from GBS to CIDP by the middle of May by their neuros.
I then had a sural nerve biopsy done & it was given to Dr. Peter Dyck, the “so-called” guru of CIDP to read. Remember, this is the neuro who actually gave CIDP its name & wrote the first book on it. I remember when he & his team came into my room & told me that I had GBS & would be totally cured within a year. Even though he was the so-called expert on CIDP, I knew in my heart that I would not be cured in a year. I knew I was in this for the long haul.
Now, over 4 years later, I still have nerve damage in my feet & some in my hands, numbness as well. Even though Dr. Parry tells me the strength in my hips & knees is normal, then why do I get so tired walking, & why are stairs still so hard? Maybe it’s as Marc says, I can do it well for once or twice, but then I start to feel fatigued. When Dr. Parry is testing my strength it is just the one time. I know I have axonal damage, if not I would be all healed by now. That is why I have just learned to accept that this may be as good as it gets, & go on the best I can. I think I know more at this point than the doctors about my body. I am finally learning to listen to it as well!
May 31, 2006 at 10:12 am #12172AnonymousInactive
Hi Liz…Your comments about axonal damage make sense. I had axon damage on the left side and that side is still weak even though I am “healing.”
I gather that myelin can regrow but axon damage is a different story. If so, I count myself very fortunate that this is the only residual effect I seem to have. Here’s hoping it continues…for me, you, and other CIDP’ers….Annie
May 31, 2006 at 6:29 pm #12202AnonymousInactive
Having axonal damage, it’s easy to detect. The nerve conduction tests will show it if it’s occured. Then again, depending on your doctor, you can just say the words too, to cover for what you can’t explain without looking at any evedence. Signals won’t send or return if you have an area effected with axonal damage. I’d say numb spots, that never came around yet, are axonal damaged areas, because nerves or the signals aren’t reaching those spots. Fatigue comes in a variety of ways, and axonal damage will contribute, but it’s not the sole source.
Pam stated just what I said happens, in previous threads about GBS/CIDPers and strength issues, or fatigue. The doctor, an expert too, had her do a strength test once, then moved on. Now, you have false evedence working aginst you. I fought this from day one in therapy. For some reason, my line, that the more I do any single task, the more disabled I’ll become, wouldn’t click with anyone. If you can do it once, then you should be able to do it all the time. I still fight this today with doctors who can’t come to grips that real function, all the time, when needed at any given time, can be elusive for us GBS/CIDPers. Take a grip meter and squeeze it once to get the strength in pounds readout, then do it 9 more times in a row. What does the reading after number 10 say compared to the first try? Now you’re getting a truer look at your real strength overall.
May 31, 2006 at 9:58 pm #12219AnonymousInactive
My neurologist said that I had axonal damage in my ankles indicated by the EMG, nerve conduction study. It affects me a lot with balance. Some of my sensory nerves are repairing because now I can feel heat/cold and the needle prick on my feet and lower legs which previously I could not feel. Because my ankles are so week, I wear AFO’s and they help immensely in my walking.
June 4, 2006 at 1:25 am #12452AnonymousInactive
The Drs. would be able to diagnose axonal loss with your EMG/NCV tests. If you had a sural nerve biopsy, axonal damage would show up in the area they tested. Since the sural nerve feeds the feet, and they are usually first affected, that is a particularly good nerve to biopsy. The other posts were pretty good information wise.
My understanding is that axonal loss is permanent. What would happen, I think, is that the signal would find another “pathway” around the destroyed axon. That would take time, if at all. The “Inflammatory” part of CIDP is inflammation of the axon when the myelin sheath is being destroyed by the immune system. Since you are not having that destruction anymore, your myelin sheaths should be rebuilding and nerve signals should be reaching their destination. Axonal problems should not be getting worse for you now.
I don’t know if you want to go through another set of tests to determine the extent of your losses. BUt an EMG and NCV would answer your questions.
By the way, thank you for letting me know the site was back up. That was so kind of you.
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