My neuropathy...

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ERomanO
ERomanO Member Posts: 317 Member

My neuropathy may not be from chemo after all...  or, at least, not totally.

I started noticing the tingling and spiny jabs about 2 years ago - roughly 5 months post Tx.  It wasn't pleasant to say the least, but eventually I was prescribed Gabapentin and that seemed to calm it down.  After a year or so I began winding down the Gabapentin as the neuropathy seemed to be dissipating, or maybe I was just becoing accustomed to it and didn't really notice it as much.  Regardless of the reason I wasn't bothered by it nearly as much.

Then, starting about 6 months ago, I started noticing more numbness and tingling, especially in my hands.  So I started to ramp up the Gabapentin to about 3/4 of what I inititially took.  But a couple months ago I started waking up at night because my left arm was super numb and my hand would hurt terribly from the numbness, and all I had to do to relieve the numbness and pain was to move my arm to my side.  This, I thought, was not neuropathy.  So I went to see my PCP and with one question - "Does your arm go number when you put your wrist back and apply pressure?" - to which I answered "Yes, while I'm riding my bike", she gave her educated guess diagnosis - t was a classic case of carpal tunnel syndrome.  I got an EMG a week later and CTS was confirmed.  So it seems that at least some of the numbness I had been experiencing was due to CTS.  I'll be getting that fixed next month and since, I was told, it is usually bilateral I'll likely have my right arm checked (I've since begun feeling a little numbess in it) and fixed as well.  My PCP was able to identify the symptoms as she went through it herself.  The doctor performing the test said my carpal tunnel was mild enough to be completely reversible.  My PCP said hers was cured almost immediately.

On top of that, the numbess in my feet (especially the big tow on my right foot) may not be due to the chemo either.  While talking with my older brother it seems that I've been experiencing the same maladies as him, just 2 years or so later.  One of them that he suffers from is numbness in his toes and a burning feeling.  Yep, that's me, too.  He also gets a tightness as if his foot is in a vice, which I don't have, so I can be thaankful for that... so far. His doctor thinks he has "familial peripheral neuropathy".  Who needs chemo induced peripheral neuropathy when genetics can do it for you?

It will be interesting to see what happens after thecarpal tunnel surgery.  If the numbness caused by it goes away will that arm feel normal again?  There is likely not muh that can be done for my feet, but I'll try whatever I can.

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  • wbcgaruss
    wbcgaruss Member Posts: 2,276 Member
    edited October 2020 #2
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    Well, Well, Well,

    Who woulda guessed after all this time figuring it was from cancer treatment and maybe it's not, at least not 100%. Well if it is not cancer treatment-related you are probably better off because it may be able to be treated like your carpal tunnel for instance. But the foot problem looks like a family thing. Glad you are doing well and hoping the carpal tunnel treatment solves your problem in that area take Care-God Bless-Russ

  • Joel4
    Joel4 Member Posts: 263 Member
    edited October 2020 #3
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    Good News

    Sounds like great news.  I started feeling tingling and numbness in my right forearm and wrist last fall.

    Had a nerve conduction test and they ruled out CTS right away.  After multiple scans and visits with neurologists they have concluded I have radiation induced plexopathy which basically means the radiation fried nerves in my brachial plexus and they expect that my arm will worsen until it no longer functions.  I have a PET scheduled this Wednesday to rule out the possibility that the cancer made the jump into the nerves.

    I'd be feeling might good about some carpel tunnel right about now, lol!

  • ERomanO
    ERomanO Member Posts: 317 Member
    edited October 2020 #4
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    I meet with the surgeon

    I meet with the surgeon tomorrow morning and I'll have some questions for sure.  I go for my 2 1/2 year follow up with my oncologists and I'll have questions for them as well re:radiation indiuced neuropathy.  Yeah, I'll take the CTS any day.