Peripheral Nueropathy

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Hi. I had an Allo Bmt or sct in May 2021. Since December 2021 have suffered with chronic gvhd. I also seem to have what I believe is peripheral nuropathy in my thighs particularly. My thighs seem a sort of numb sensation with tingling a lot of the time but do not really have any pain. It is only my sensory numerous affected. If I put a warm spoon on my thigh or an ice cube I can feel hot or cold, if I use a pin I can feel this as well and my knee reacts if I hit my funnybone. However my thighs seem over sensitive. Does any one know if this is a gvhd symptom or could be or chemo. If anyone has had experience of this did it disappear over time? We’re any treatments used to reduce the nueropathy?

  • Good mornings , no answers from I’m afraid.

    I had PN following both my SCTs with various presentations of GvHD after my second SCT but also major nerve damage especially down the life side of my neck resulting in random unexplained pains above and below that area (this was where my brick sized mass was)……. I would say it took a good 3 years before I removed the strong pain meds from my repeat prescription. The main tool in overcoming this was a regular exercise regime that was initially set out by a cancer trained fitness instructor that I was seeing as part of a mens exercise group at out local Maggie’s Centre.

    I have no idea is this us PN or GvHD related or indeed long term nerve damage……. How active are you?

    These are just thoughts and are based on what my SCN told me. As you will most likely know PN tends to present in the hands and feet….. PN is a temporary nerve damage ‘thing’ where our nerve endings are made far more sensitive due to the toxicity of our treatments, but our nerves system runs through the body and is actually connected to our skin (I know this very well as I have a rare skin NHL) so we can see dramatic changes in our skin sensitivity. I suffered with this on and off over my many years of treatments but it always cleared up….. but following SCT it took much longer.

    SCN said that my nerve damage in my presentation area (neck) would corrupt the messages between my brain and the rest of my body so could well explain ransoms pains especially as I tried to get fit and rebuild my muscle mass. At times my legs were very sore, sore or sensitive to touch?….. I would say yes but I am now 3-4 years on from this point and I am now doing about 10k on my exercise bike every morning plus many 5k walks.

    I had skin GvHD and found my skin very sensitive but not to the point it was a big problem…. I think I just learned to live with it and eventually fixed itself.

    No real answers just a brain dump….. I do hope you make progress.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Hi Mike, Thanks for your reply it is appreciated. I do have hypersensitivity in my feet especially to temperature and pressure although it does seem to be subsiding a little with help of more touch and I believe from using a revitive medic which is a glorified tens machine for the feet and calves which also promotes better blood flow due to the muscle contractions it creates. I cannot perform exercise like you as I have sclerotic skin in calves and most of thighs making my mobility very bad. Very peg legged or Roman. It is like wearing sleeves of concrete on calves up to knee and a band above knee. As I say I do get tingling and a sort of numbness on my thighs in front but I can sense things so I guess there is hope of some sort of recovery I guess the gvhd is just exacerbating things and also I guess the massive reconditioning. I guess all I can do is wait and hope the gvhd goes and things gradually start to get better as I re strengthen my legs. I also had a secondary cancer which caused a spinal compression and temporary paralysis of the legs and was bed bound for three months unable to support any weight on my legs so I have all this strength to recover when I am able. Baby steps as they say and patience. A long hard journey still to go.

  • Good morning ..... this all sound rather challenging. As amazing Allo SCT is...... there is a playoff with post treatment 'leftovers' some can disappear relatively quickly others can be life long.

    The muscle wastage in the legs can be considerable during SCT and add any other health existing condition to the is indeed hard work.

    No answers from my i'm afraid but I can give you lots of support and encouragement to keep on keeping and yes, lets see continual improvements.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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