Peripheral Neuropathy
Peripheral Neuropathy I apologise in advance for posting this item for information on this forum, but don’t know where else to turn. You ladies have such a wealth of knowledge and experiience that I hope someone can help. I vaguely recollect some ladies on the secondaries forum mentioning peripheral neuropathy as a side effect of chemotherapy.
My husband has not been able to walk more than 50 yds for some 6 years now, and this has had a huge impact on our lives. He has been seeing various consultants and techs for a whole year and tonight at a private appt with a neurosurgeon, who was convinced last week that hubby had spinal canal stenosis, said it is only mild and does not account for his inability to walk and virtual anaesthesia over the L4/L5 lumbar verterbrae. He said he can only think it is a neurological problem and is asking our GP to refer him to a neurologist. Ted had an RI last week on his spine, but we found out tonight that it was only on the last third. A new MRI has been ordered for the upper two thirds to see if stenosis is there, but the neurosurgeon doubts it.
He seems to think it is peripheral neuropathy, as he quite openly said he can’t think of anything else. How wonderful to have a consultant tell you doctors are not infallible, and they are learning all the time.
Peripheral neuropathy Hi Lizzie
Peripheral neuropathy is just a general term for nerve disease that affects the peripheral nervous system (upper and lower limbs) rather than the central nervous system. I’ve had it in both arms and hands for about 17 years now and they can’t find a cause, although I’ve been told MRI is the best thing for diagnosis. I’m waithing to see a consutant about having one.
The chemo that causes PN is taxanes (taxol and taxotere) although the effects are just temporary and it doesn’t affect everyone.
If your husband isn’t receving it already he should consider applying for Disability Living Allowance (Mobility component) which would enable him to get a Motability car, a disability badge, exemption from road tax etc. I’m a benefits adviser so if you need more info let me know.
Fingers crossed for hubby’s next scan. Hopefully they will get to the bottom of things and he can start getting treatment to relieve his pain and discomfort.
Lola x
Peripheral neuropathy Hi Lola, many thanks for responding. I’ll talk to Ted about DLA and try and get him to apply.
He had a second MRI scan last Sat afternoon, privately. The techn said she couldn’t tell him anything and would have to wait for the report to the spinal neurosurgeon. However, the nurse, who assisted at both procedures did say to him: “You didn’t waste your time in coming back today”. We assume therefore, something abnormal was seen on the scan, which was on the top two thirds of his spine.
Why they didn’t scan the whole spine the first time (on the NHS - after having waited 5 months) seems a waste of resources, both financially, and emotionally, for us.
He is hoping to hear today from the neurosurgeon’s secretary with an appt for an early consultation, and the hope it can be fixed quickly with surgery. His feet are frozen and blue and he is afraid the numbness will spread up his legs, leaving him unable to drive, or even walk at all. We live in a very isolated area with no local public transport. He is 78 yrs old, but otherwise fit and healthy, although he takes some 7 different medications daily for high blood pressue and high cholesterol. I do wonder if there is ageism in the NHS, as it has been a year since he first went to his GP with numbness in his toes, and the problems have slowly become worse. We only went privately on the advice of the cardiologist who did an angiogram a month ago, (that found a long, blocked artery but cardo said this was not causing his walking problems as smaller arteries have taken over the blood supply to the heart muscle) and suggested we see a neurosurgeon urgently, privately. He didn’t even ask if we had any money! Glad we did, as things seem to be moving in the right direction towards a proper diagnosis.
Thanks again.
Liz.
AA not DLA Hi Liz
I’m glad Ted’s new MRI has shown up something. Fingers crossed.
Sorry but for some reason I assumed he was under 65. As he is 78 he cannot apply for DLA - it will have to be Attendance Allowance which, unfortunately, doesn’t have a mobility component (it appears there is ageism in the benefits system too!)
AA is for personal care: bathing, dressing, etc but takes in supervision for safety even if he can physically manage by himself. The forms are long and tricky so if Ted agrees to apply I would suggest getting help from an advice agency, CAB, etc,
Good luck and let us know what his neursurgeon says.