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The UKFibromyalgia Forums • View topic - Hi Everyone... just been kind of diagnosed... I think



Hi Everyone... just been kind of diagnosed... I think

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Hi Everyone... just been kind of diagnosed... I think

Postby ClaireyCro » Mon Apr 30, 2012 8:53 am

Hiya

I've been on an MS forum for quite some time now after my GP suggested that she thought that was the cause of my problems, I have been under a neurologist and also an immunologist since August last year. The immunologist has just told me he actually thinks its fibromyalgia hence why I've ended up here. Here's my story... its a bit long I'm afraid!!

I've just turned 30 (still hate saying that lol!!) and my main problems started in August 2010 although I started getting headaches in November 2009. At the beginning of August 2010 I had sudden onset of extreme headache on the Saturday evening, I felt like my head was going to explode... this continued and by the Tuesday my neck was completely stiff, they admitted me into hospital on the Tuesday evening with suspected meningitis although I had no fever or rash and only slight sensitivity to light, my body felt drained and over the coming days I could barely stay awake for more than 20 minutes. I had a lumbar puncture on the evening I was admitted by a senior consultant and they kept drawing blood so stopped after about an hour, the following day another senior consultant attempted another lumbar puncture at about 4pm and once again he kept drawing blood so stopped after a similar length of time and sent me down to theatre about 7pm for the anaesthetist to do it, they confirmed the following day that it was not meningitis and they weren't sure what it was. I remained in hospital until the Friday when I was discharged with an outpatient appointment for 2 weeks time. The next 2 weeks were horrendous, constant headache and my body felt wiped out.... was not helpful as we were packing to move house and were supposed to be moving from England to Wales at the end of the month. I saw the consultant again and he referred me for an mri scan as the headaches were still there. The mri scan came back with a 9mm area of high signal on the t1 and flair weighted images which they thought was either an area of calcification or an aneurysm in my left cerebellum posterior area of my brain and requested that my new gp in Wales refers me to a neurologist and arrange a ct scan both with and without contrast of my head. By the time my ct scan came in the October I felt pretty normal, still had mild headaches... usually this felt like just a dull muzziness but other than that I was ok, the radiologist reported on my mri scan and thought that it was a lipoma which is a benign fatty tumour of incidental finding with no further follow up required and that was that.

The headaches continued but once again it was more of a daily dull muzziness and never stopped me from doing anything, I've always been an upbeat always on the go person, until April 2011. I started having sharp stabbing pains in the back of my head, they would only last for a few seconds at a time and only now and again however when they did happen it hurt... bad, and it was always in the same place. I then in May started feeling my fingers were going numb, then my toes all right sided and I remember one evening... we had come back from a family party and were staying with my parents... first the right side of my right hand, then I had a sharp pain in my right shin and the right side of my right foot, then the right side of my face... my mum thought I was having a stroke however like with the other numbness it disappeared after about 15 minutes. I then started to get pins and needles and the odd sharp stabbing pain in various places over my body... I decided to visit my gp.

She referred me to the neurologist, I had to wait until August to see him and during those couple of months these sensations kept happening, I was also experiencing dizziness, cognitive issues... a piece of work that would usually take me 20 minutes was taking me 3 hours, issues with memory and concentration. When I saw the neurologist he was quite dismissive, tried to tell me this happy go lucky, upbeat girl had stress or anxiety... not the case I've never had anything to be stressed or anxious about, my job came easy to me, my personal life was fine. He refused to re MRI me, the line I had was 'the NHS simply don't have the resources to continually mri people'. So that was that, he did refer me for nerve conduction studies to check for peripheral nerve damage however these showed a slight weakness on my right side but nothing outside of normal ranges and suggested I be referred to an immunologist.

Between September and January of this year once again I was fine, the odd twitching thumb, the odd numbness but nothing like before, headaches were still there but not too many of the sharp pains. Then January came and all of a sudden my vision started deteriorating, I felt like the world was playing out in front of me and I couldn't see it properly, my eyes wouldn't focus properly and my right eye was blurry like I had cream in it or something. This stayed with me for 3-4 weeks before I eventually went to an optician, they said my optic nerve cup seemed unusually large however the pressures in my eyes were normal, they did 2 visual fields tests both of which revealed abnormalities with my peripheral vision, I was referred to opthalmology for which I am still awaiting an appointment.

I saw the immunologist in February, he's a lovely guy... reminds me a bit of Dr House of the TV program House but a much nicer version. I went through everything with him and he did stacks of blood tests all of which were ok and requested another mri of my brain and neck. He also put me on pregabalin. I was ok, once again headaches still there but fine... then about 5 weeks ago on a Sunday I was walking down the stairs and bam.... the sharp pain in my head, same place again but this time it lasted for longer and was more intense. Around half hour later I started getting prickling on my stomach... didn't feel like pins and needles more like annoying prickly heat... it then moved to going down my spine until the evening when it went right from my head down to my foot... this time all left sided. It lasted for around 20 minutes and kept coming and going. The following day it persisted on and off but was also happening in my right side... I had a burning cramp feeling in my lower left arm and then about 3pm I suddenly felt dizzy and felt like I was going to pass out or be sick, I sat down for 10 mins and then was ok. I still wasn't feeling too great by about 7pm therefore I rang NHS direct who subsequently sent me to the out of hours GP at the hospital. He assessed me and didn't see any signs of medical emergency however was happy to admit me so I could be monitored if I wanted to be.... I didn't want to be admitted so went home on the provision that I rang my GP the following day if I didn't feel any better. Well I didn't feel any better and my GP booked me in for the Wednesday morning. Saw the GP, he took blood pressure etc which was hight therefore admitted me into hospital. The hospital looked over me and then sent me home with a paper bag to breathe in and out of... saying it was anxiety led neurological symptoms... although they clearly hadn't gone through all of my medical history.

Went to work on the Thursday and it was still happening, then from about 11am I was dizzy the only way to describe it is I just felt drunk, I was unstable on my feet therefore went back to the GP that evening. She took me off the pregabalin incase it was that causing it however I'd been on it for a while by then and told me we just have to wait for the MRI. I was off work for the next week and went back to the GP the following week as I still wasn't much better. Signed me off for another week and put me on amitryptline, the next week passed and I was getting burning cramps in my legs, arms and still feeling dizzy and unbalanced, also felt like a nodding dog and my neck kept jerking went back to the GP signed off for another 2 weeks until after my MRI. The next 2 weeks passed and I started feeling slightly better but still not right, on the middle Sunday my left leg started twitching in my thigh this was continuous all night and you could see it, looked like a scene out of Alien. Had my MRI scan on 20th April. On the Sunday the headache came back, my neck was feeling slightly stiff again and I kept feeling like I could feel my pulse in my head back to the docs signed off again for another two weeks. This remained until the Wednesday when my head actually felt like it was in a vice... I felt like there was so much pressure in there it was unreal. On the Wednesday night I thought I'd have a bath and take two ibuprofen to see if it would shift it... it didn't and I stood up to get out of the bath and thought I was going to pass out, I walked to the bedroom and my feet and ankles felt like I had burning cramp again and my left thigh and hip the same. The Thursday morning, I wasn't feeling as bad and have continually felt slightly better since then, no pain or anything really but still a bit of odd dizziness.

So on Saturday the immunologist called me, he said that my MRI was completely clear and that he thinks its fibromyalgia!! I'm not overly sure to be honest and also don't know much about it. I haven't had any of the pressure points I see mentioned pressed and if I press them it doesn't cause me pain, also I understand that the hallmark symptoms are chronic pain and chronic fatigue/unrefreshing sleep and I wouldn't really say I have either. I'm also slightly confused about the MRI scan being completely clear... if they had said other than the lipoma it was clear I could understand however they didn't.... it was completely clear!! So I'm a bit confused to be honest.

I just wondered what others have experienced in the early years of fibromyalgia and what your thoughts are on my situation?

Any help would be hugely appreciated so I can learn to understand what is going on in this crazy body of mine, thanks for reading my super long post.

Lots of love

Claire xxxxxxxx
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Re: Hi Everyone... just been kind of diagnosed... I think

Postby denys » Mon Apr 30, 2012 10:04 am

Hi Claire and :welcome: to the forum, sorry to hear your story :yikes: some of what you describe could be associated to FM or numerous other things which is usually the case. FM has sometimes been misdiagnosed as MS and sometimes the other way round :yikes: :yikes: :yikes: :yikes:

You seem to have had enough neurological examinations, the tender point test is not always used and you cant do it on yourself, it has to be carried out be omeone who knows what they are doing. Go and see your doc and talk it through with them, ask for an explanation of how the diagnosis has been reached and 'what happens now' but in the mean time there is loads of info on here and if you have any questions just ask, not guarenteeing we will be able to answer it but we'll do our best :wave:
Denys

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Re: Hi Everyone... just been kind of diagnosed... I think

Postby *Lisa* » Mon Apr 30, 2012 10:05 am

Hi Claire & :welcome:

Going on a fibromyalgia point of view with what you have said....

First off have you tried any massage or physio around the neck area? (this can help symptoms) Maybe ask to be refered to a physio they can also see if you may have fibro and examine your neck.

It sounds to me and its only my personal opion but my main area is my neck.... that when your neck is so stiff it can press on many nerves which is why you may have experienced the tinglng and the types of sensations you had down your spine and other areas. Stiffness in the neck can cause daily migraines/tension headaches/vision problems/fatigue/dizzyness/pulsating and many more symptoms.

These episodes could be when your neck muscle goes into spasm? im no GP but i personaly have suffered awful neck problems for over 13 years now.

I found the neck stiffness (in a vice feeling) to be worse in the mornings.

All the other symptoms you say can be that of fibro.

You can ask to see a rheumatologist or physio for further investigations to whether its fibro

:goodluck1:
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: Hi Everyone... just been kind of diagnosed... I think

Postby ClaireyCro » Mon Apr 30, 2012 12:19 pm

Hiya

Thanks for your replies.

I don't really have too many issues with my neck or not that I'm aware of anyway... the only times my neck has been stiff is when I was admitted to hospital with suspected meningitis in 2010 and then last week. The MRI was of my brain and c-spine (neck) and they didn't pick anything up there but then not sure if they would. Might book an appt with the GP.

Really don't know much about all this so going to have a read around the forum and on the internet today.

Thanks for your responses.... it really means alot.

Claire xxxxx
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Re: Hi Everyone... just been kind of diagnosed... I think

Postby shazq » Mon Apr 30, 2012 12:56 pm

:welcome: claire :wave:

I would ask your Gp to refer you to see a Rheumy to get some answers. :goodluck1:
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Re: Hi Everyone... just been kind of diagnosed... I think

Postby FluppyPuffy » Mon Apr 30, 2012 5:01 pm

:welcome: to the forum claire :penguin: :penguin: :penguin:

Not much more I can add to what Denys and Lisa have already said. Hope you can get some definite answers soon :fingerscrossed: :fingerscrossed:

Just ask if there's anything you want to know and we'll see how we can help you with it :bear-dancing: :bear-dancing: :bear-dancing:


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Re: Hi Everyone... just been kind of diagnosed... I think

Postby ClaireyCro » Mon Apr 30, 2012 5:46 pm

Thanks to you all for your replies.

I'm just really looking to find out how it started for everyone else if poss?

Reason I ask is that I don't really have either of the hallmark symptoms of chronic pain or chronic fatigue my symptoms are more sensory if that makes sense.

Thanks so much.

Claire xxxx
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