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The UKFibromyalgia Forums • View topic - Anybody Seen A Neurologist?



Anybody Seen A Neurologist?

All your questions and experiences of medication and treatments on the NHS or Private Healthcare.

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Re: Anybody Seen A Neurologist?

Postby Planet of my own! » Fri Aug 29, 2014 8:02 am

I have since had the all clear with the MS thankfully.
When I recently saw my pain specialist and he went through my meds and all parts of my condition - fibro,cfs,me, plus other things I won't bore you with, I asked why I would be showing nuerological signs and he said
- most likely I have had a virus of some kind that has damaged some myelin (?) as seen in MS but mine has not progressed to MS.

I think our bodies are very complex and confusing and on top of this fibro is added.

:-) xx
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Re: Anybody Seen A Neurologist?

Postby wornoutbloke » Wed Sep 10, 2014 9:50 pm

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Re: Anybody Seen A Neurologist?

Postby Jo90 » Fri Sep 12, 2014 8:03 pm

I had my appointment today and was very nervous. I told the doctor all my symptoms and he said he'd send me for an MRI scan. No way could I have one of these and I told him so. After a bit of non-invasive testing, he told me I don't have MS - what a relief! I was so sure I have Fibro after researching all my symptoms but I didn't feel pain at the pressure points. It was as if it was all in my head but the truth is that I had pins and needles in hands and feet and burning in my legs as I spoke to him. THEN, he asked me if I'd suffered any kind of trauma and I said yes, something so upsetting that he almost cried with me while I told him. Suddenly, it all fell into place and he explained how such trauma can affect the body and he knew my symptoms were real but a symptom of severe stress. He told me that psychiatrists are now saying that Fibromyalgia is way over diagnosed and symptoms could be due to heightened anxiety. This does NOT mean that it's all in the mind, a phrase I find insulting, but very real. He advised me to take medication but I think I'll see how I am after the relief of knowing it's not a degenerative illness. Just talking to him made me feel much better but I was utterly exhausted after facing all those emotions today.
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Re: Anybody Seen A Neurologist?

Postby wornoutbloke » Fri Nov 21, 2014 10:09 pm

Well I had my electronic tests this week the doctor really annoyed me. My tests were fine it's not ms which is great but he then said 'well you're obviously depressed and you need to do more because your tests are fine'

I explained I'm going through a bit of a personal crisis at the moment and I'm exhausted because of it and that I'm getting annoyed with going from one Dr to another who keep telling me I need to do more when the pain I've been experiencing for over a year has led to me not being able to go anywhere and end up pretty much housebound. To which he said nothing and I left.

I've done hydrotherapy and this neurology thing this year, tried several medications to which nothing has helped and now I just don't want to ask another Dr for help and I know that's not the right thing to do I'm just tired of going on this merry go round to which there is no improvement.
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Re: Anybody Seen A Neurologist?

Postby zappa20 » Sun Nov 23, 2014 11:20 am

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Re: Anybody Seen A Neurologist?

Postby Queenie_70 » Sun Nov 23, 2014 12:25 pm

Dear wornoutbloke,

I had a neurological appointment after I saw my GP, and the neurologist chose to cancel it as "it wasn't related to any neurological condition that she knew of." Which is really clever, as she has never seen me, never took my history, or knows what has happened with my daughter who died at the age of five from Atypical Infantile NCL. After doing my own research, I carry a gene, as did my ex, which together created this lovely condition for her to bear....but, and here is the kicker, I could also be carrying the adult version which means I have less than 10 year life expectancy. Now if this is not the case I would like to know, but if it is, I also want to know, so I can do what I want to do with the time left. She said, and even gave a name, of a Psychiatrist, because I was obviously causing all these symptoms myself. If that is the case, tell me, and I will find a way of stopping it, because trust me I don't want to live this way if I can just stop it myself:) Point is Neuro's can be arrogant, they still only put their trouser's on one let at a time like we do, so don't let them bother you, or make you more stressed as this will eventually cause more symptoms to appear.

I know exercise is toted around like it is something we can do, and trust me, I know when I cannot get myself to the toilet, I laugh about it, thinking, if only they (the doctors) could see me now...but on my less painful days, the ones that I can actually get down the stairs, I do try to walk. My cane and partner hold me up, possibly a walker or double crutches would work for you, and I do pay dearly for it, but if I don't get the fresh air, I know I am even worse. Just food for thought.

Gentle hugs, there is always someone out there willing to listen, especially on this forum.
"Life is not measured by the breaths we take, but by the moments that take our breath away."
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Re: Anybody Seen A Neurologist?

Postby Planet of my own! » Wed Nov 26, 2014 9:14 am

Hi all, sorry to hear what you are going through :(.
I've been through a time when I was banging my head against a brick wall with Dr's trying to get someone to take me seriously. It made me feel very low for a long time, which then had a big impact on my fibro symptoms. Finally I was listened to, at first by a gastero Dr, it was like a weight lifted off of my shoulders as he recognised I needed help and I was not mad. That's how I got a referal to a pain specialist, not through a Gp!!
After a lot of tests etc this year I have now seen a leading neurologist in fibromyagia in Bath. He has confirmed Fibro, saying all the symptoms I was naming are related to fibro and not anything to do with anything else worrying going on. But he respects what fibro can do to us, thankfully.

He gave me a task of writing out a daily time table (which I have found very sad to need to do ) but this has started to help me, I try to stick to it where possible, but life obviously changes that. I have set myself time slots for getting up, doing a task, rest, task, rest, task etc. this has helped me as sadly I need the help of structure to get me through each day. I have noticed I do suffer when I veer away from this plan.

I have a brilliant family and friend next door that keep me going to. I have recently stopped working as it all got too much, even though I only worked 12 hours a week :(

All the things like exercise etc that is pumped into us maybe very important but at times even simple things seem too much to take in. My brain is unable to think of the bigger picture, I have terrible trouble with processing things. So breaking down my day on paper along with lists galore has started to help.

Maybe it would work for anyone else, it's worth a try, even if it just helps highlight things to you that could be changed for the better.

Also I don't know about any of you but when people mention anything that seems impossible, eg exercise, tasks. I think of big things, where I need to keep reminding myself, a task could be - wash up breakfast dishes. This is a big enough task for many of us that will have our bodies asking for a sit down.
Similar to where I have stated Rest, that may mean sit down for 10 minutes with a hot drink, then get going again.

Don't forget to try to add a small bit of 'me time' into each day. However little, do something for yourself.

Sorry this seems to go on and on!!

Take care all,
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Re: Anybody Seen A Neurologist?

Postby debs67 » Wed Dec 17, 2014 10:13 am

Saw a neurologist in october , my trauma consultant referred me to see him . He asked me loads of questions and done an examination and said I had secondary myofacial pain associated with osteoarthritis, . He wanted my duloxotine upped . Little did I know that 2 months later when I saw my consultant that he told me I had fibromyalgia. Have to go back and see him in april , got the appointment through already. Been suffering for over 2 years with this , hopefully now I am getting to the problem.
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