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The UKFibromyalgia Forums • View topic - Neurologist appointment......



Neurologist appointment......

Anything to do with the NHS or Private Healthcare.

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Neurologist appointment......

Postby Tempest » Fri Jun 21, 2013 8:41 pm

I was diagnosed with fibro at Xmas (by a rhuematologist who I thought was rubbish and didn't examine my trigger points after saying in the letter to my GP that he had!!)

I wasn't happy with trusting his diagnosis and had an appointment this week with the neurologist who specialises in this area. He was very thorough and was with him for 2.5 hours!! Basically he said that he doesn't think it's fibro but some kind of 'myalgic' condition and that I'm on my way to full blown chronic fatigue syndrome. He said that if I don't cut back on my work hours I would get full blown CFS and my health will be damaged permanently and I won't ever fully recover.

He's referred me to an occupational therapist, nutritionist and counsellor and recommend a range of supplements but he said there's no point starting treatment if I'm working full time as I won't have time to implement the lifestyle changes their suggesting (which is a vaild point I guess)

Not sure what to make of it all to be honest as what with enjoying the new job and only just having started I can't ask to cut hours at this point. It's a one year contract so I don't want to put them off renewing and I could possibly negotiate less hours in the future when they contract renews but not at the moment.

So at the moment I feel like I don't know if I have fibro or not now or what an earth a 'myalgic' condition is as it sounds v. vague!!! Any ideas/advice greatly received :-D
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Re: Neurologist appointment......

Postby *Lisa* » Fri Jun 21, 2013 9:21 pm

Myalgic is M.E

*Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)*

He seems to think its more of a chronic fatigue symdrome then that of fibromyalgia.
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Re: Neurologist appointment......

Postby Tempest » Fri Jun 21, 2013 9:53 pm

Hmmmm......must admit I'm confused :shock: When I read up about CFS/ME I don't feel I fit the profile half as much as I do for FM :-? What happens then if you've got one consultant saying it's fibro and another saying it's CFS/ME?
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Re: Neurologist appointment......

Postby Purpledot » Fri Jun 21, 2013 10:55 pm

It is fairly common to have both conditions. Many of the symptoms kind of cross over both, too, but there are certain things that define it being one as opposed to the other.

I suppose you need to speak to your various doctors and ask for specific diagnoses to find out if you do, indeed, have both.
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Re: Neurologist appointment......

Postby *Lisa* » Sat Jun 22, 2013 6:52 am

You could speak with your GP about your confusion and having both conditions?

Although you say the neurologist was a specialist in this area and thoroughly examined you and therefore he maybe right out of the two.

Maybe consultant one didnt need to do a trigger point test as all symptoms matched those of fibro and add that with GP report he maybe felt that was enough?

Reading up on conditions is very different to seeing someone who is a professional in there field of work and has many years of working in this area and seeing thousands of patients... just a thought there.

I personaly would have a chat with my GP about it all.
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Re: Neurologist appointment......

Postby Tempest » Sat Jun 22, 2013 8:47 am

Thanks for the replies. In all honesty I've not really involved my GP in the process at all and haven't been since before Xmas. She told me originally that I couldn't possibly have fibro and I had to fight for a referral in the first place so I'm not really interested in going back to seek her opinion in all honesty :(

When I've read up about the neurologist he seems like the country's leading expert in CFS/ME but I can't find much mention of fibro in his work so I'm wondering if that's why he's going down this route?

Re: the rheumatologist the reason I didn't want to go back to him was not just that he didn't examine my trigger points but he said in his letter to my GP that he had examined my trigger points and I'd showed tenderness in certain areas. That's what really upset me that basically he claimed to have examined me and he hadn't :shock: He also put me on hydrochloxoquine which is a lupus drug 'just in case' I had lupus (even though blood tests had shown that I didn't) and that drug made me really ill to the point I had to stop taking it.

Don't know really, just feel very confused :shock:
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Re: Neurologist appointment......

Postby *Lisa* » Sat Jun 22, 2013 12:39 pm

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Re: Neurologist appointment......

Postby FluppyPuffy » Sat Jun 22, 2013 12:40 pm



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Re: Neurologist appointment......

Postby *Lisa* » Sat Jun 22, 2013 12:51 pm

As a Public Moderator & Admin of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia...Lisa
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Re: Neurologist appointment......

Postby Tempest » Sat Jun 22, 2013 9:29 pm

Thanks for all the replies - I'll try and answer everyone :-D

Lisa re: the consultant - nope I went on my own so no witnesses. I actually phoned his secretary when I read the letter as I thought he'd written it about someone else as I knew I hadn't been examined. He phoned me within minutes and said that he didn't need to examine me as he could 'tell from looking at me' that I would be tender on the trigger points. All my blood work for lupus was negative I was told but he said he wanted to try the quine as an 'empirical approach'. The neurologist I saw this week was horrified when I told him and asked if it was a private appointment (it was!!) not that that should make a difference though! I basically decided there was just no way I was going back to see the rheumatologist and in all honesty I've just not go the time or energy after work to chase up complaining etc.

Yep GP did say she thought it was lupus (I didn't think I had any lupus symptoms at all really as my pain is all muscular not joint pain) but lupus tests were all negative and I don't fit the symptom profile imo. My gynae had suggested fibro but when I said that to the GP she said' 'she wouldn't have said that as there's no way I had fibro!'

My GP practice has a number of doctors and I've only been registered there a couple of years - have seen a couple of the docs who all seemed okay but I thought this lady was the best out of all them but have changed my mind since this has been going on. Again I just don't feel I have the time or energy to try out any of the others on the off chance they might be better. Getting a docs appointment is such an ordeal for me as I'd have to race back and go after work and I'll be exhausted and in no frame of mind for sitting in the waiting room and having an appointment.

I have got the school hols coming up in a month so I might be able to be more proactive about appointments then but at the moment the thought of having to go after work just puts me off booking anything.

The neurologist has referred me on to the other therapists so I will be starting treatment - he was just saying that I'd be wasting my money if I don't reduce my workload. He also wants me to come off of pregabalin and go on to duloxetine but he needs to write to my gynae first and clear it with her as she put me on it :-D
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Re: Neurologist appointment......

Postby MichelleJ » Sat Jun 22, 2013 9:53 pm

Hi tempest I have a joint fibro, m.e/Cfs diagnosis. I too was told to reduce workload and learn to pace and that in my current job they could see I wouldn't be able to do that but if I didn't want to get worse it was vital. It was a newish job and still on probation so no Way I could cut back and pace my days. So I ignored them and just rested at weekends and as predicted I crashed completely and had to give up work altogether and the Cfs took hold. It's 3 years on now and I'm a mess with it. Gone from successful career to needing full time care and supervision and Often stuck in bed and use a wheelchair. This might have happened anyway but I can't help thinking if I'd have listened and gone off sick sooner I may not be as bad as I am now. My life Has changed beyond recognition.

Only u can decide what you should do and your in a difficult position with it being a one yr contract u hope will renew. But the early days with Cfs m.e are vital from what I can see to how it turns out long term. U mention the summer hols and being off. These are only a few weeks away now so could u just rest completely when not at work and then use the hols to implement the techniques he said about and then judge fom that how u should go forward.
Dx with fibromyalgia m.e/Cfs and asthma
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Re: Neurologist appointment......

Postby *Lisa* » Sat Jun 22, 2013 10:18 pm

I find some private consultants will and do perscribe medication above the NHS *norm* this mainly is because its private and not coming out of the NHS funding also many private specialists are licensed for bigger drugs but saying that its still a huge risk with the meds he tried to give you and no wonder why the nuerologist was horrified.

I went to a fibro specialist once and without going into my personal details perscribed meds my GP would never have agreed to knowing my background. I binned them! I didnt tell my GP just put it down to a bad appointment and moved on.

Sounds like the neurologist has found you a good action plan i hope it help you :-)
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Re: Neurologist appointment......

Postby Graciebaby » Sun Jun 23, 2013 2:39 pm

Hi,
I have a diagnosis of both ME and FM.
All I can say to you is please read the post written by MichelleJ very carefully. I'm afraid I have to agree with all that she says.

I was a teacher, I continued to push on with work instead of resting during the early days of my ME (Myalgic) diagnosis. I collapsed eventually and was never able to return to my career. The early days of a diagnosis of ME are a vital time to promote the best chance of a good recovery.
There is no point in believing that any meds will see you through this and allow you to keep improving, they won't I'm afraid. So your Neuro is right in saying that there is no point in medicating to keep you managing your life as you have been doing, without making important changes.

I'm sorry to be blunt. I completely understand your predicament, but the choice of working at all may be taken from you in the future if you do not make important changes now. That is pretty much what happened to me. I also pushed myself in other ways even after I was off work sick and I gave the Fibro a chance to really get a grip on me.

I think you are fortunate in the Neuro that you have seen, he's talking sense.
I know it seems so easy for another person to say to you that you will have to take part time work etc, because they don't appear to understand your personal circumstances or the implications to your life, but...... all they can do is spell out the truth to you and I think that this is what your consultant has done.
I'm not sure that a GP can offer you better advice.
Sadly, MichelleJ and myself are evidence of what can happen if you do not take that advice at the time it's offered.

You have the right however to make your own choices and decisions.
It's a tough call......I know.

Take good care of yourself and I'm sending you a wee hug because I understand your situation, as I'm sure will quite a few others on this forum.

G. x
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Re: Neurologist appointment......

Postby MichelleJ » Sun Jun 23, 2013 9:16 pm

Graciebaby, u mentioning the meds and them not being enough to keep u on the same lifestyle as u have been living, this was exactly it with me. I was prescribed tramadol and amytriptyline but because I wasn't slowing down enough I got worse despite the drugs. I do worry advising others they should rest in the early days with me not knowing their personal circumstances but I so wish someone other than my drs had been blunt with me and Said this is what will happen if u don't rest. But I didn't know anyone who had it severely and wasn't on here then. Only person I knew of with it still worked full time with loads of travelling and had time for church activities too so I just thought it would be fine cos she coped. My drs never told me how severe it could get, just that I had to rest and pace to control it and prevent it from worsening. If I knew then what I know now and if I had seen someone so badly affected as both me and friends I've made since with it are then I think I would have done things differently.

But certain family members said I had to carry on and not accept the diagnosis if I was to get better. They were told this by a non believing g.p so it was expected I'd keep going, mind over matter, exercise will fix all you just need to move attitude we're all so familiar with.
Dx with fibromyalgia m.e/Cfs and asthma
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Re: Neurologist appointment......

Postby whoami » Sun Jun 23, 2013 10:55 pm

I totally agree with MichelleJ and Graciebaby....

Fibro for me was triggered by an accident at work. I have dealt with many many doctors through workers compensation (injury at work insurance), Canada Pension Disability and my own personel Dr's, rhuemy's, nuerologists, a nuero surgeon and various therapists.

Every one of them told me that my lifestyle was going to change, like it or not. One Dr said, I was going to live a painfully long life.

I thought....no, no, you are all wrong, LOL. I would take far too many drugs thinking that the more I took the more I could do....wrong. I learned the hard way so many times and they were very hard lessons to learn.

Workers compensation would not retrain me for work that possibly could have been more suitable. They said that realistically I could not sit in a classroom 6 hours a day let alone remember or sometimes understand what was being taught.

I am also telling the truth in that if people do not adjust their lifestyle to their abilities, quality of life will deteriate quickly.

Over the 24 years of dealing with this I have learned to adjus, slow down. I can now enjoy many of the things I did before I was diagnosed. I do them differently, more slowly and maybe not fully. I know my life may never be as it was so I don't dwell on that fact. I live for what I can do and enjoy today.

Listen to your Dr's, you may not like what they have to say and you may choose not to hear it. They are as frustrated and confused at times with fibromyalgia.
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