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peripheral neuropathy, anyone know anything about it?

(12 Posts)
hellymelly Sat 26-Jan-13 22:55:03

Posting for my lovely friend who is having a hellish time. She's had pain in her feet and legs for months, sent to a neurologist, he diagnosed PN, and ordered many blood tests, including one for tumour markers, as she had breast cancer five years ago. So far bloods are normal. He gave her some really heavy duty opiates which didn't dent the pain, and just gave her terrible constipation. She has stopped taking them and is on an anti-depressant (she isn't depressed) which is meant to help the neuropathy but seems to be making her worse. Doc has now asked for a CAT scan of her pelvis, chest and abdomen, and lots more complicated bloods. She is worried about the radiation from the scan- would an MRI give the same info? Can she ask for that instead? She's also exhausted as barely sleeping with the pain, and has a part time job and two teenagers so can't rest up much. She looks completely worn out and the lack of sleep in particular is driving her demented. Any experiences or advice would be really welcome, as looking online it seems as though often no cause is found? She isn't sure what the Doc is looking for with the scans or bloods, and desperately wants some treatment that would help with the pain so that she can sleep.

giraffesCantEatNHSPotatoes Sun 27-Jan-13 03:29:34

You need weegiemum will message her on Facebook!

weegiemum Sun 27-Jan-13 06:24:44

Hi I got giraffes message!
I'm so sorry for your poor friend. I have CIDP which has PN as one of it's symptoms, and started with awful pain and numbness in my feet and legs, which also ended up affecting my hands and face and my balance.
I know the hellishness of the tests. This time last year I was going through it all.
First of all I'd suggest a new neurologist, to be honest! Purely the sending her away on opiates would say that to me, they simply don't work for nerve pain! The antidepressants can help (they do me, and I'm not depressed!) but there are several options. From my experience, referral to the pain clinic urgently would be worth fighting for. There she could see a consultant anaesthetist who specialises in neurological pain, who can prescribe some really expensive things such as pregablin or gabapentin.
In all her tests, has she had EMG (it's an electrical test of nerve function) as that can be very helpful in diagnosis. Or a lumbar puncture? My full body scan was done as a MRI, I also had ultrasound of my abdomen and CT of head and neck.
There are some treatments for PN such as steroids, which are cheap and cheerful. I receive IVIg, an IV drip once a month. It's in hospital but it's worth it.
One of the biggest causes of PN in younger women is, unfortunately, breast or ovarian cancer, which will probably be what all the scans and tests are about. I suppose she's at higher risk due to her history, but better to find out. I had a terrifying 2 weeks waiting for these results.
Another thing I found helped was B vitamins which are really good for nerves. Mine were tested and were low (though we think that's because I'd stopped eating due to vertigo). I take a general supplement and I'm sure it helped, and get 3-monthly b12 injections at the GP.
I can't think of anything else right now, but feel free to pm if you or she want to know more. I hope she gets good news soon.

weegiemum Sun 27-Jan-13 13:43:17

I chatted about this with my husband who is a GP (so not a specialist of course) having looked at it when I got sick. He was actually at medical school with my consultant <<old gimmer>>.

He had a couple of extra concerns - your friend should have been able to get decent neuro pain help from her GP who also should be rather dissatisfied with what the neurologist is doing. It's really very, very basic medicine that you don't use opiates first line in neuro pain.

The other thing is to ask has she had a full neuro examination including stregth testing. PN in legs and feet can make you unfit to drive as it makes emergency stops unreliable. You don't mention it, and with other things you've said about her care, dh is slightly concerned this might be a problem.

I'd be happy to chat to her personally, I know how hard it is to get help and information!

TheAccidentalExhibitionist Sun 27-Jan-13 16:52:49

Amazing advice weegiemum.
In addition to everything above try using opsite sticky transparent dressings and acupuncture. Some people find wearing silk socks helps too.
Pain clinic referral, anti depressants and Gabapentin absolutely can help.

hellymelly Sun 27-Jan-13 22:45:21

Thanks so much weegiemum. She had some electric shocks to her hands and feet when first sent to the neuro, about 8 weeks ago- that was what gave the diagnosis apparently, as her reaction times were slowed. She hasn't had a lumbar puncture, at the moment its been lots of very expensive (acording to her GP) blood tests, and the request of CT scans now, which she hasn't had yet. The painkiller she was on was referred to as "essentially heroin" by the GP, who was rather horrified, and she had expressly told the neuro she didn't want to take an opiate. (she isn't very medically minded so didn't realise that is what she had until she showed the GP on Friday). She's had a double mastectomy and I think she doesn't have ovaries, as she's had a hysterectomy too. I'll double check, but i am pretty sure she had her ovaries out. She is 49.
I am concerned about the driving. No-one has mentioned this to her.
She doesn't use mumsnet, but I might get her to log in as me to read all this, she may well want to pm you weegie if that is ok. She is just having such an awful time because she is in constant pain and unable to sleep. She's quite a stoic, cheerful type, not a moaner at all , its very worrying. I'm sorry that you have all this too.

rockinhippy Sun 27-Jan-13 23:04:58

Hi, you've already had excellent advice, so not much to add, bar getting her to add 2 cups of Epsom Salts to her hot bath & soak in it as long as possible, if no bath, a foot bath will do - it helps the body regulate pain signals & stress & also helps with sleep, natural & nor worries of any drug interactions - no miracle cure, but I find it definitely helps - good luck with all the tests

weegiemum Mon 28-Jan-13 11:59:19

Great to hear others ideas, and glad it's helpful, helly.

I tried acupuncture but it bizarrely irritated my legs. I have a monthly massage and my lovely best friend treats me (I can't argue!!!) to a 6-weekly pedicure (I find cutting my toenails scary as I can't feel if I'm doing it wrong and anyway have limited hand strength to deal with my horny toenails!!). Someone suggested a chiropractor to me but I'm very, very wary of that as my (and many other people's) PN originates in the spinal ganglia, where the nerves leave the spinal column. I just can't have anyone who's not a medical expert in my condition messing with my back!!

I'm going to try the Epsom salts!

I meant to mention the therapeutic professions. With PN she should be entitled to free or reduced cost podiatry which helped me to begin with, choosing appropriate shoes etc. I find tight-ish shoes in the daytime helps, but a lot of that might be to do with my balance. I had 6 months of neurological physiotherapy to help with balance and dealing with numb feet, exercises to do etc (also had specialist hand OT as I was very weak and clumsy for a while, though that's improving!). At night, I have a bed-arch which keeps the covers off my feet and lower legs - should have mentioned that already! - provided by the local district nurses, also a shower step and extra handrail on the stairs from rehab team.

If PN affects her mobility, she might be entitled to a blue badge for parking?

Pain is awful, I really think she needs to push for a very urgent referral to the pain specialists - sometimes pitching up in A&E (and yes, this is an emergency for her, she's becoming ill through lack of sleep and no one is helping her) is the fastest way. Have to admit that being a weak and feeble crying woman can help too, at the GP.

Her GP shouldn't be mentioning the cost!! NHS is free at the point of need! My treatment costs £5000 a month, I looked it up. The blood tests she's having (probably same as mine) can be £1000 a go, but that's NOT HER PROBLEM . But it does sound like they've done nerve conduction studies.

The three top neurological units in uk are London somewhere (can check!), QMC in Nottingham and the SGH in Glasgow. I understand there's also a pretty good one in Newcastle. She can always ask for a second opinion.

I'm happy to pm her, or pass on my email via you, helly, to chat more!

hellymelly Mon 28-Jan-13 23:19:35

I have passed on all the info and hopefully she has read the thread, although she is in a terrible state, so she may not have. Last night she had one hour's sleep, and that is fairly typical. She said she has tried pregablin and Gabapentin but they didn't help, or at least they didn't help at the doses she found tolerable. I have told her about asking to be referred to the pain clinic, am hoping that can be sorted out quickly? Otherwise maybe she should go to A+E. I don't see how she can go on like this, she looks a shadow of her normal self. (she's very active and a cheerful person). She's very down about it. Weegie thanks for the offer of email advice, I have passed that on. Very kind of you.

hellymelly Mon 28-Jan-13 23:21:24

Oh and we are in West Wales, so the nearest of that hospital list would be London. Six hours away but I imagine she would go and see someone in acapulco if it was likely to help.

weegiemum Mon 28-Jan-13 23:25:46

I'll email my friend with my condition tonight to ask about clinics in the south of the country (I'm in glasgow so not much help with that).

She's very lucky to have had pregablin outside a pain clinic, it's normally only prescribed by a specialist! But can be hard to tolerate drowsiness-wise.

I can see (given your location) why getting a decent referral is hard - years ago I had nasty kidney related pregnancy complications but lived in the very remote NW of Scotland - took months to get help!.

Pm me if you/she want my email.

hellymelly Tue 29-Jan-13 15:17:39

Thanks weegie, I'm going with her to the GP later, as she had an hour's sleep again last night and wants someone awake with her and her DH. The neurologist prescribed the pregablin, I'm not sure what side effects she had, I will ask. Will update after we've seen the GP.

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