Hi Jenni

Sadly, most of them in southampton/portsmouth are pretty bad! I've had similar experiences - useless is probably the best description - although I did get referred eventually to a good neuropsychologist - who told me everything I wanted to know . A friend who works as a consultant (not neuro) recommended a good person to me last year in this area, I'll email him to check on the name. I got the answers I wanted from the neuropsychologist, who was brilliant so haven't followed it up... not yet anyway. I have apparently lost the myelin sheath on most of my nerves! Hence burning pain.... not related to the RA - but is one of the side effects of things like Humira ... but I had the pain before, so have assumed it's not the humira!

Sorry to hear you are having so much problem. I'll get back with a name when I've got one.

Anne x

Dr Christopher Halfpenny
BSc, MBBS, MRCP, PhD

Speciality
Neurology

Sub-speciality
Multiple Sclerosis and CNS neuroinflammatory disease

http://www.suht.nhs.uk/C...pennyDrChristopher.aspx

Here's the guy that was recommended to me (hopefully he's not the one you just saw!). He's based at Southampton but does visit Portsmouth. My friend works as a consultant at Portsmouth. I can't see whether he does private work (he's not on the Spire list for soton or pompey); but a phone call to his secretary at Southampton might answer this question. If he does do private work an appointment is about £120 - but you'd need copies of your scans for him to see. If they are already done by Southampton then his secretary would tell you if he has access to them easily (which I'm sure the answer would be yes). You could give her a quick ring before you go to the GP, then you can tell him what you want (either private referral or an urgent NHS referral - if that's all there is) GP's are obliged to give you a second referral for a second opinion.

I'm guessing you must have seen Dr T!!!

My problem was that I had Guillian Barre a few years back and was left with chronic nerve pain - burning, pins and needles, no feelings, numbness, no hot/cold sensations. It's mainly in my arms and legs, but my whole body has no feelings most of the time. (useful for getting things out the oven without gloves!!!) My Rheumatologist didn't want me starting anti-TNFs without the OK from my neurologist as they are known to cause the same problems, which is why they are contraindicated if you've got MS. I went to a talk run by the Portsmouth Rheumatologists all about it last year and neuropathy (burning, stinging, numbness, loss of sensations - hot/cold, no proprioception - although neuropathy is really just arms and legs only) is one of the risky side effects of anti-TNFs - which sounds a bit like you have had. I asked if this was reversible and they said not always, which is why my neurologist was asked first... he decided I was at no more risk than anyone else for it to get worse! So far the nerve pain hasn't got worse on Humira. I did meet a lady there who found it was reversible; but the consultants from Portsmouth weren't keen to risk it without another opinion first. Sounds like Portsmouth consultants are very knowledgeable on this compared to other places. I'm certainly impressed with them.

I went to the chronic pain clinic and for the nerve pain I take Gabapentin, amytriptyline (10 mg at 8 pm) and tempazepam (10 mg at night) This usually means a I get some sleep - and it dulls the nerve pain. I do find it difficult to deal with the RA pain on top - but Oramorph seems to help for that!! I feel like a bit of a junkie!!!! Everytime I drop down the doses the pain increases after about 5 days. So I restart the lot again.

Hope this helps a bit and you get something useful from your GP. Feel free to ask the NRAS for my email address (not sure I'm supposed to put it on here!) and/or phone number.

Anne x

Really pleased Anne was able provide you with such valuable info ! What would we do without this forum, at times like this it says it all.

Hope all goes well with the GP today.

Julia x

Hi Jenni

That is wonderful information from Anne and hope this really helps you to get something organised. You have been treated very shabbily and it is time someone somewhere acknowledged your very specific needs. We aren't just talking RA here but major neuro issues. I mean, for goodness sake, you don't need to be a rocket scientist to work out something is going badly wrong for you! I'm not into bad language and 'idiots' doesn't really cut the mustard but you get my drift

Thinking of you Jenni,

Lyn x

Hello Jenni

Glad you got help and support from your GP today.

Take care

Rose

Hi Jenni

Really pleased to hear your GP is helpful. That sounds a good plan. It'll be interesting to see what the letter says. My GP always prints me off every letter that's written about me.. and I put them in a file so I always have a copy.

My GP is fantastic - and he is my key to most things. Although I have to say my Rheumatologist is A* too. The key there is her secretary... she then rings me back!

Hopefully we'll hear from you again when the letter emerges from the mire!!

Hope you have a more calm and less stressful weekend

Anne xx

hi Jenni,

glad you now have a Plan of Action.

hopefully this will boost you.

take care,

Suzanne x

Hi Jenni sorry the consultant was so horrible i think it's always bad when you are referred to as a rheumatoid patient anyway!

Also i don't know if this will help but my brother sees an immuno neurologist at Hope hospital which is a teaching hospital and one of their specialities is neuro, he was referred to him from another neurologist, i wondered if there is such a consultant somewhere down your way. My brother has sarcoid and is also under a rheumatologist at the local hosp and they liaise between them about his treatment.

Best wishes hope this is of some help.

Bevxx