How is PN diagnosed?

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Not really sure what to expect or even ask a doctor about this. I think PN is causing my issues though....my feet are very achey, cold all the time, feel somewhat numb. Sometimes my pinky toe really feels numb but also aches. I can hardly walk first thing in the morning and I've pretty much been unable to do much more than grocery shop and my feet are killing me. I mean I'm in misery by going shopping.

The reason I'm thinking PN is that I had chemo 2 years ago. I do have arthritis, but this pain at times feels different than arthritis.

Oncologist nurse told me over the phone that it is too far out for it to be PN caused by chemo. But my experience with oncology is they don't like to deal with side effects.

So...what do you think, where should I go with this?

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15 Replies

  • Posted

    Hi there, my friend got pn from chemo.

    Your symptoms sounds allot like mine. I know exactly how you feel, getting up in morning is excruciating. I cannot stand for any amount of time. Grocery shopping kills me.

    I have a weird numb feeling, it feels like a glove is on.

    Even if chemo wasn't the problem, it doesn't matter really. Some people just get it. I developed it after being in coma. They are not sure why.

    You can go to doctor, they will check your senses, Pin prick, lots of other tests, I've had then ALL. Seen ask kings of doctors for treatment because pain is quite severe. There are medication options that may help. They've certainly helped me. The worse of it is the burning, prickly pain, a med helps with that, I also take anti inflammatory and pain med.

    Sorry you're suffering with this. I've had it for five years now. So i am in acceptance with it.

    Let me know if I can be of further assurance.

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  • Posted

    I have dealt w PN for years. You need to deal w this now, it can get worse, do not ignore. It is important to see Drs who deal w these issues. My team of Drs are pain management educated. There are test to pinpoint if your nerves are involved, MRI to see if discs havebulged etc. Important not to ignore as this all can and quite often progresses to be life changing. Deal w this it is important! Best of luck, I understand your fear, pain and fustration. This can be a very long journey it will take perseverance and you can and will handle this, no other choice, it is what it is. 🍀🍀🍀🍀🍀🍀🌷

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    • Posted

      Thx to you both for responding!

      I'm really struggling to not let myself get depressed about this. Whatever is happening to my body, whether PN or something else, is really affecting my life. I think I've been in some sort of denial over it, but I have to stop. Mostly because things seem to be getting worse over the last few months.

      Tonight my feet are killing me because I've been up straightening the house. sad

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  • Posted

    Hi

    i am going for a nerve conduction test next week and apparently this will show whether there is any neuropathy. I have had quite a long wait!

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    • Posted

      Hi Martin

      I am in the U.K. and attended a nerve conduction test at Stoke

      hospital recently which came back 'unremarkable'. Unfortunately

      at that time they did not have the facility to carry out a punch

      biopsy test which may have confirmed small fibre neuropathy.

      All blood work and other related tests have come back normal

      so I am no further forward in confirming the underlying cause

      of this debilitating condition.

      I do hope that you get answers. Best wishes

       

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    • Posted

      Hi, totally understand your frustration. I've had a nightmare since 2014

      trying to get a full diagnosis. All your symptoms and many more.

      After many tests I was referred for a nerve conduction test in

      July 2016.I was called back to have it done again by the

      consultant. At this appointment ,he diagnosed me Severe Small

      Fiber Sensory Polyneuropathy diffuse with Autonomic Neuropathy.

      I was shocked because I thought I'd just get the test done and leave.

      However, the report that this consultant was sending back to my

      Main consultant, also found its way to me. Interesting reading

      Mention lack of equipment . The fact I received this has caused

      a big hoorahh . I'm now having to go back for a 3rd nerve test

      to be done by the head of dept.I wish someone would just take

      ownership and treat me like a human being . And not like just a number in

      there system .

      I also live in Stoke and attend Stoke hospital .

      Im fairly new to this site , but I found it helpful to know that there are

      other people who are suffering like I am . Unless you are going through the

      same thing , you can't completely understand how awful it is .

      I hope this has helped a little and will answer any other questions

      You may have . Take care .

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    • Posted

      Hi Mandy.

      Yes, like you, a report filtered through to me suggesting that 

      funding for skin punch biopsy could possibly be available

      'during the autumn(2016)' .I don't know if this has, in fact,

      happened but on enquiry with my neurologist it was not

      suggested.

      I take medication which helps me sleep but has no effect

      on pain experienced during the day. Unfortunately with normal

      analgesics not helping with this type of pain it's finding medication

      which helps with the least side effects.  AD's ughhhhh!!

      I should be interested to hear the outcome of your further tests

      and wish you the very best...😊

       

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    • Posted

      Hi , the same remark about skin biopsy should be available

      In the autumn 2016 . The other tests were suggested I believe

      are available at Birmingham . I don't mind how far I have to

      travel to have these tests done . I am on various medications

      the latest one being gabapentin . Which has helped with

      the stinging and burning sensations. I also have sleep issues

      Which adds to the fatigue as I'm sure you suffer from too.

      I have had to push and fight for every appointment and follow-ups

      For results . I have been helped enormously by the PALS team at

      Royal Stoke.

      There is other info I could share but I'm not comfortable doing

      this on public forums. I can't work out how to send a private

      message.

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    • Posted

      Hi again, like you I'm unsure how you send private messages. Perhaps

      someone on the forum will advise?!!

      With regard to medications (including gabapentin)I have to admit to not giving them along enough trial due to the various unacceptable 

      side effects. At present I am taking Mirtazapine but was told 

      that this has little effect on nerve pain. Have you experience of

      Duloxetine?

       

       

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    • Posted

      Hi, no I haven't been given that medication or know any information

      about it. With the amount of meds, I sometimes don't know what's

      helping or not.

      The only meds I would never take again is Topamax.

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    • Posted

      All of these type of drugs appear to be 'off label' and

      originally treatments for other than nerve conditions!??

      Ohhhhh, why can't nerves regenerate themselves and

      be the old normal............

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    • Posted

      I know , after the 2nd nerve test he told me that the diagnosis

      he gave me was Neuro and Autoimmune.. That was mid September

      Autoimmune conditions are known for damaging healthy cells

      So I thought the next step (after nearly 3 years) would have been

      to find out which Autoimmune condition it was ,and if not repairable

      slow down the progression.But no we are almost 4 months later

      and still in limbo land.

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    • Posted

      Hello Mandy,  here is how to send private messages. For example if i wanted to send you one above,  there is a grey envelope at the top left hand corner underneath where the black star is,  i would just click on that and it will take me to your private page where i would write what i wanted, you will get a notification to read it next time you log on. So anyone you want to private message go to their post on here and to the envelope. Hope this helps.

      Elizabeth

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