Neurologist for Neuropathy?

marbleotis
marbleotis Member Posts: 720 Member
in Colorectal Cancer #1
Has anyone seen a Neurologist for their neuropathy? Did it help?

Comments

  • marbleotis
    marbleotis Member Posts: 720 Member
    #2
    Can anyone help with this?
    This will help me alot.
  • ron50
    ron50 Member Posts: 1,723 Member
    #3
    I saw one several years ago
    Unfortunately he was unable to help me at all. Right from the start he apologised and told me that he found it very difficult to diagnose chemo related neuropathy. It is the same with kidney disease,I have had three kidney biopsies to try to diagnose my protein loss. They all come back positive but don't relate to any known kidney disease. My neurologist said it was the same with neuropathy. He ran a series of nerve transmission tests on me but said the results were pretty inconclusive. That was around seven years ago ,my neuropathy has worsened and I have been trialed on lyrica,neurontin and endep. I finished up on high doses of lyrica and neurontin and noticed very little benefit , the side effects were unpleasant and they cost me a fortune . The pharmaceutical benefit scheme in Australia only covers their use for epilepsy. Ron.
  • Jaylo969
    Jaylo969 Member Posts: 824 Member
    #4
    ron50 said:

    I saw one several years ago
    Unfortunately he was unable to help me at all. Right from the start he apologised and told me that he found it very difficult to diagnose chemo related neuropathy. It is the same with kidney disease,I have had three kidney biopsies to try to diagnose my protein loss. They all come back positive but don't relate to any known kidney disease. My neurologist said it was the same with neuropathy. He ran a series of nerve transmission tests on me but said the results were pretty inconclusive. That was around seven years ago ,my neuropathy has worsened and I have been trialed on lyrica,neurontin and endep. I finished up on high doses of lyrica and neurontin and noticed very little benefit , the side effects were unpleasant and they cost me a fortune . The pharmaceutical benefit scheme in Australia only covers their use for epilepsy. Ron.

    Neuro
    I am 2 1/2 yrs out from last chemo tx. The neuropathy got somewhat better after I finished up chemo but this past summer it has gotten bad again. Last week my onc told me that it wasn't from chemo that it is getting worse again and she suggested I see a neurologist. I declined for a couple of reasons.

    1. I went to a neurologist at her suggestion for my back/compressed disks. It took 7 wks to get an appointment, my back wasn't hurting anymore, he had an emergency and could only give me 10 mins. and took that time to tell me he couldn't do anything and it will get worse. Maybe I can go to physical therapy( in his office of course ) and that might help. Declined that.

    2.I am sick to death of being sent from specialist to specialist and dishing out $50.00 a visit to be told that nothing can be done or being sent from one specialist to another specialist to another and ending up no better and sometimes worse.

    Have you tried alpha lipoic acid? My primary keeps suggesting it to me but I haven't got there yet.

    Best wishes and if you go to a neurologist please let us know the details and if it helps you.

    -Pat
  • abrub
    abrub Member Posts: 2,174 Member
    #5
    Jaylo969 said:

    Neuro
    I am 2 1/2 yrs out from last chemo tx. The neuropathy got somewhat better after I finished up chemo but this past summer it has gotten bad again. Last week my onc told me that it wasn't from chemo that it is getting worse again and she suggested I see a neurologist. I declined for a couple of reasons.

    1. I went to a neurologist at her suggestion for my back/compressed disks. It took 7 wks to get an appointment, my back wasn't hurting anymore, he had an emergency and could only give me 10 mins. and took that time to tell me he couldn't do anything and it will get worse. Maybe I can go to physical therapy( in his office of course ) and that might help. Declined that.

    2.I am sick to death of being sent from specialist to specialist and dishing out $50.00 a visit to be told that nothing can be done or being sent from one specialist to another specialist to another and ending up no better and sometimes worse.

    Have you tried alpha lipoic acid? My primary keeps suggesting it to me but I haven't got there yet.

    Best wishes and if you go to a neurologist please let us know the details and if it helps you.

    -Pat

    Pat, the Alpha Lipoic Acid
    Pat, the Alpha Lipoic Acid did help me significantly (tho not completely.) It's worth a shot. Ideally you'll see results in 4-6 weeks.

    Alice
  • steveandnat
    steveandnat Member Posts: 886
    #6
    Havent tried
    I tried accupunture Sept 7th but didn't notice any improvement. I figured it would take several sessions before I might notice anything but it wasn't cheap so I had the accupunturist submit a claim to insurance. Well yesterday I got the rejection letter from blue cross blue shield. So I may never know if accuputure works on my bad neuropayhy. Pray we find something that will help. I use a compound on my feet and it help for a few minutes and its not cheap. Jeff
  • Jaylo969
    Jaylo969 Member Posts: 824 Member
    #7
    abrub said:

    Pat, the Alpha Lipoic Acid
    Pat, the Alpha Lipoic Acid did help me significantly (tho not completely.) It's worth a shot. Ideally you'll see results in 4-6 weeks.

    Alice

    Alpha Lipoic Acid - Alice
    Thanks for the recommendation, Alice. I'll try it.

    -Pat
  • marbleotis
    marbleotis Member Posts: 720 Member
    #8
    Jaylo969 said:

    Neuro
    I am 2 1/2 yrs out from last chemo tx. The neuropathy got somewhat better after I finished up chemo but this past summer it has gotten bad again. Last week my onc told me that it wasn't from chemo that it is getting worse again and she suggested I see a neurologist. I declined for a couple of reasons.

    1. I went to a neurologist at her suggestion for my back/compressed disks. It took 7 wks to get an appointment, my back wasn't hurting anymore, he had an emergency and could only give me 10 mins. and took that time to tell me he couldn't do anything and it will get worse. Maybe I can go to physical therapy( in his office of course ) and that might help. Declined that.

    2.I am sick to death of being sent from specialist to specialist and dishing out $50.00 a visit to be told that nothing can be done or being sent from one specialist to another specialist to another and ending up no better and sometimes worse.

    Have you tried alpha lipoic acid? My primary keeps suggesting it to me but I haven't got there yet.

    Best wishes and if you go to a neurologist please let us know the details and if it helps you.

    -Pat

    What is that
    I never heard of alpha lipoic acid
  • Jaylo969
    Jaylo969 Member Posts: 824 Member
    #9
    marbleotis said:

    What is that
    I never heard of alpha lipoic acid

    Over the counter-A L Acid
    http://altmedicine.about.com/od/alphalipoicacid/a/alphalipoicacid.htm

    I have never learned to do the clickable links for this site.

    I have also heard that doctors are starting to rx Cymbalta for neuropathy.

    -Pat

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