Which neurologist?

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Which neurologist?

Postby serendipity7000 » Sat Mar 23, 2013 7:47 pm

Hello, I joined this site a few months ago after an extremely nasty reaction to local anaesthetic at the dentists, which hospitalized me. I had had allergy ruled out via tests at St Thomas's so it is classed as an 'adverse' reaction. I remained extremely unwell for over a month with muscular chest pain, head pains and severe exhaustion. Since then I have been trying to build up my fitness. Found that the slightest exertion would knock me flat for a few days. Then managed to do a bit more, with only a day in bed now and then. Then last week I went swimming (just pottering really) and went slightly deaf and everything flared up again.

Anyway - to get to the point - I made some link between my long-standing fibromyalgia and the local anaesthetic (I think). And discussed with my sister who is a paediatric nurse specialist, who was the best person to see now. Hospital had said they would write to GP and ask him to refer me back to Immunology, but GP said no point and I agree (they mainly deal with allergy). Sister and I reckon a neurologist - as they deal with fibromyalgia, and also with neurological symptoms (I had severe neurological symptoms after the local anaesthetic, including speech, balance and memory problems).

So - been waiting to feel a bit more recovered before getting a referral as sick of medical things! Anyway GP has (reluctantly) agreed to refer me to a neurologist on the grounds that I have Fibromyalgia and have never seen one. He thinks 'there is nothing to do'. My argument is - logically - I can a) do nothing - but need a lot of dental treatment and the local anaesthetic made me very ill (worse this time than last). or b) see a neurologist to see if they can make some link between the reaction and my fibromyalgia and possibly suggest something I could take before, or after (as an antidote).

He says he doesn't know a neurologist who specializes in fibromyalgia, so it has been left that I will research neurologists and he will have a look as well.

I have found the names of 3 or 4 who sound quite good in the North of England - but none of them mention fibromyalgia. Not one single neurologist in the North of England, as far as I can see! Does this mean it is still not an accepted condition?

So - can anyone recommend a neurologist in the North of England - or - am prepared to travel. Thank you!
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Re: Which neurologist?

Postby denys » Sat Mar 23, 2013 11:15 pm

I saw a number of neurologists at Walton hospital Liverpool could try there
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Re: Which neurologist?

Postby serendipity7000 » Wed May 15, 2013 9:49 am

Thanks. Apologies for delay in replying - have been unwell. Did you get any joy with any of the neurologists in Liverpool? Have a docs appointment next week, to go along with a 'name' for a referral. Ironical - haven't got my referral organised yet as been too unwell to think about it!
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Re: Which neurologist?

Postby whoami » Wed May 15, 2013 1:24 pm

Serendipity......Sorry to hear of all your issues with anesthetic. Luckily, I have had well over 20 surgeries and no issues with anesthetic.

If it is the anesthetic that is giving you the problems could you be referred to an anesthesiologist? It would make sense especially if you have not found any allergies.

Too bad you don't live here I could refer you to a good one, one who has fibromyalgia! ;-)
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Re: Which neurologist?

Postby serendipity7000 » Thu Oct 03, 2013 9:27 am

Hello again. Well I'm not much further on and now urgently in need of dental treatment again. Laptop got broken so couldn't find all my info, had a fall in the summer and basically time just passes while you muddle along.

So - still no joy finding a neurologist. Having googled, yes the ones in Walton Liverpool say they deal with Fibromyalgia. That's quite a long way from me (am near Darlington North East Uk). There was one in Leeds who specialises in effects of drugs on the brain - but not fibromalgia - and as my specific problem is severe reactions to local anaesthetics, thought he might be Ok - except I think I read on here that someone said none of the Consultants in Leeds believe in Fibromyalgia. Plus there is a general Neurologist in York who has had reviews for being nice to deal with and sounds caring.

I can't see anyone listed in Newcastle with regard to Fibromyalgia.

So - sorry to ask again but any recommendations for a neurologist who is good with fibromyalgia, anywhere in the North of England?
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Re: Which neurologist?

Postby SchroedingersCat » Thu Oct 03, 2013 10:23 am

I saw a neurologist in Leeds who certainly believed in FM and agreed with my GP, and the physio and rheumy I saw, who all diagnosed FM. Unfortunately I don't remember her name :oops: and I'm not sure if it was St James or Chapel Allerton where I saw her. But Leeds definitely has pain clinics etc for FM so it's not an anti-FM city at all. If I can find anything with a name on, I'll get back to you, but it was early 2012 so I am afraid I don't hold out much hope.
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Re: Which neurologist?

Postby serendipity7000 » Thu Oct 03, 2013 10:48 am

Thanks! Was it Dr Helen Louise Ford (she is listed under neurologists in Leeds). Another one listed is Dr Melissa Maguire. I've read good reports about Dr Oliver Lily, but from people with MS, so it sounds like that is his main interest and specialism. But he is also down as having experience in 'the effects of medication on the brain'.

I'm looking for someone who not only knows about FM but also the neurology of adverse drug reactions. (have already been tested negative for allergy and told it is just an abnormal adverse reaction). Abnormal it may be, but I was seriously ill afterwards with severe neurological symptoms - as if I'd had a stroke. These did wear off but it took about 6 weeks, during which time I had severe chest pain and shortness of breath as well as blinding headaches - not to mention the exhaustion!
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Re: Which neurologist?

Postby SchroedingersCat » Thu Oct 03, 2013 10:53 am

Hmmmm...Helen Louise Ford sounds familiar, the others don't. i couldn't tell you anything about specialisms, only that she was sympathetic and clearly a believer. I especially liked her as she told me my reflex reactions were superb for a woman my age :lol: Good luck, hope you find someone
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Re: Which neurologist?

Postby serendipity7000 » Thu Oct 03, 2013 12:56 pm

Thank you. What did she actually do when you saw her please? Tests? Scans? Referrals for treament? If it's not too personal.
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Re: Which neurologist?

Postby SchroedingersCat » Thu Oct 03, 2013 1:10 pm

Not much actually. Long chat about why I was there, standard poking and prodding, then some physical reaction tests. She'd got a letter from my GP explaining the referral was to rule out anything that hadn't already been tested for, and she just agreed that it looked like FM, given that on every other level I was a very fit and healthy 47 year old woman. Sorry, other than that she certainly seemed to believe in Fibro, I don't think this is much help to you. Everything I went through test wise after my GP said 'Fibro' was just to rule out anything else, and since I was and still am very fit and otherwise healthy apart from catching the odd cold I guess they were just covering all the bases.
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Re: Which neurologist?

Postby serendipity7000 » Thu Oct 03, 2013 1:48 pm

Thanks very much. Yes that was a help. So you were going for diagnosis and ruling out anything else. I forget that some people are still looking for a diagnosis. I was diagnosed many years ago, and just get on with it, but now I'm having such problems with local anaesthetic drugs, my Sister thinks I should see a neurologist and have some tests done. (She's a Clinical nurse specialist). Unfortunately she only knows about Consultants in London.
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Re: Which neurologist?

Postby nikkinoo » Mon Jan 27, 2014 8:49 pm

Denys, which neurologist did you see at Watson? I saw a doctor there for movement disorders but discharged me and said he suggests a general neurology clinic? Since been diagnosed I haven't spoken to anyone about fibro, I don't really know anything about triggers and management... only seen my go she was considering referring me to someone, I see her on Thursday.

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Before you assume, learn the facts... Before you judge, understand why... Before you hurt someone, feel... Before you speak, think... This is my message to all who do not take the time to understand what we go through.
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