I saw my Cancer Center doctor today, who oversees my IVIG treatment. He noted "your reflexes are absent." I literally had no knee jerk reaction. Now I know this can't be good. What does this mean? Has anyone else ever had it?
Then he ordered a bunch of bloodwork and wanted to see me back in two weeks. I don't know what he is looking for. I suspect he may think I have MS. Any thoughts? He doesn't seem encouraged by my IVIG progress though it's only been 2 1/2 months and I have seen some gains, and I'll take anything!!!!
Posted by dmc (Member # 5102) on :
My dad who had a terrible back injury lost his knee reflexes.
Posted by D Bergy (Member # 9984) on :
Lack of normal reflexes certainly is one indication of nerve damage, although it may also indicate other conditions.
It seems that both Lyme and the treatment of Lyme can and does cause nerve damage. I would not think the doctor would be particularly surprised by your lack of reaction, given your disease.
I have seen some nerve damage in my wife, but she did recover once much of the Lyme and Bart was eradicated.
Hopefully you will recover also.
Dan
Posted by IckyTicky (Member # 21466) on :
I was dx with MS before finding out about the Lyme disease. In my case my reflexes were extremely hyper. I wouldn't think your doctor would be surprised either.. I've read on here about more people having lack of reflexes with Lyme than my hyperreflexia.
Posted by Tracy9 (Member # 7521) on :
He didn't comment on it. I have pretty severe neuropathy, I have small fiber neuropathy. That is what I get the IVIG for; it is caused by Lyme and Bart. So it sounds like it might be part of that. It's just that this has never happened before. Small fiber neuropathy is a degenerative disease; I hope it isn't progressing despite IVIG therapy.
Posted by jwall (Member # 22999) on :
IckyTicky, I have hyperreflexia as well. My LLMD also used a bunch of other big neuro. words as well that I didn't understand. I believe I would have been diagnosed with MS as I had a lesion on my spine and all MS symptoms or ALS (not sure if ALS causes hyperreflexia or not, but I have a lot of weakness), if I'd gone back to the neurologist and not to my LLMD.
However, my gag reflex is absent. Hoping the reflexes can recover to a more normal state with treatment.
Posted by Tracy9 (Member # 7521) on :
So that's why my LLD makes me gag with a tongue depressor every time I see him. My gag reflex is alive and well. Sorry to hear about all that, jwall. I guess the absence of the knee jerk reflex isn't all that uncommon among Lymies. I won't worry. Hope they come back for all of us!
Posted by jwall (Member # 22999) on :
yes, my LLMD uses a tongue depressor too and tickles the back of the throat. No gagging at all! I didn't realize that was what he was checking for...also did not realize I wasn't gagging. Figured this out later when he wrote in my notes "gag reflex absent" and thought to myself, "no, it's not!", but sure enough, it is.
When I used to brush my tongue, i would always gag. Now I can brush all the way back and not gag at all. Kinda scary and unsettling, but excellent when it comes to swallowing mepron!! that stuff is so nasty that if my gag reflex were present, there is no way I could keep it down.
Glad your gag reflex is still there! It's odd though that the rest of your reflexes are absent, but your gag reflex is fine....and my reflexes are all hyper, but I have no gag reflex!! Hmm....
Posted by IckyTicky (Member # 21466) on :
I guess I still do have a gag reflex, although my LLMD (I don't think) has ever tested that one.