Part of my condition are everyday migraine, sinus and muscle pain headaches. some we feel in part to medications also. however no neurologist i have had dealings with to date has shown the slightest interest
after an initial general MRI test (and they have been pretty damned rude about it). yet friday, after GP referral to The London and Bart Hospital, we met with a Dr Galaher (need to double check spelling here) working in dr Taylors neurological clinic. She was not up on latest re: fibromyalgia but listened whilst examining tests to date, even bio chemist results. She listen to all the symptoms and said we need to do further tests. She also asked if i had received, the 100 question tests. which i had never heard of, which she states is a test to show how impaired your cognitives are. All this tests will be carried out at the Royal London Hospital. Paul and I came away so happy with this doctors' consultation. i will record it on the hospital review. the tests will take place during the next two months and i will be keeping a symptom and meds diary. we will have the results by september. if this works and we move on to neuropyschological(?) test (electrodes recording brain activity), and results show up degree of damage, may be of very good use for ESO reviews and appeals.
i will keep you posted. Fingers crossed they can distinguish and breakdown the differing causes of headaches and offer more tailored treatment.
so for me yesterday was truly a good day. Even my husband whom came with me was impressed as he has witnessed the ignorance of some doctors.
my care team now consist of a rheumatologist, neurologist and hopefully soon an incontinence clinic, physiotherapy and ENT for sinuses bouts? The dietary i have taken to hand myself privately and take supplements due to the numerous allergies and ibs. i also pay for bio chemist tests not available on nhs (according to my gp) but neurologist told me this is untrue( umm see how good she was). my aim is to try and reduce pharmachical meds were possible.
so here i am again, its 2.30am i had taken sleeping tabs, no worries, all positive thoughts, despite pain, after just four hours sleep. awaken alert and shaky and unable to get back to sleep, alone and in pain in a home with four loving people sleeping. i always think this illustrate the strength and true unselfish nature of us fibro's.
finally my husband knows and understands how on nights like tonight i will need to sleep when i can and i can be irritable until i take my meds and rest during the day.
anyway at least we now have our new on line family to turn to in this lonely wakeful nights. i am amazed how much each and everyone of us rarely fulfils a full nights sleep. we are not only supporting each other but learning also
i hope so to siver52. quote barts hospital tests if you feel they are not listening. i will list this hospital and doctor later today.
yes i am awake again at 6am by awn chorus (even our lovely feathered friends stop after 20 minutes), whilst family continue to enjoy peaceful slumber. oh how we wish for that sleep.
as happens after a disturbed sleep night, feeling absolutely
have terrible acid reflux and all the usual. already dropped glass of water (nothing new there), Eyes dry and gritty and headache, widespread muscle pain, stiffness. the fridge is grumbling so loud at moment.
by the time family wake i know i will hardly be able to move. my 13 yr old daughter has her friend staying the night and my brother in law takes them with our Labrador rolo for his weekly dog training session, so i will have a couple of hours rest whilst paul get dinner prepared.
well thats how it goes if there are no drama's. fingers crossed. LOL
Wow - very interesting!. My Rheumy dropped me after my diagnosis saying nothing more I can do for you - to see yr GP now. Felt like I had been picked up (finding a diagnosis) and then dropped from a damned great height (writing me off her care). I originally saw a Neurologist as all my problems started with spinal issues and then ended in me having a lower lumbar disc removed 2 yrs ago this month. Then other things started to go wrong and 2 yrs later I get diagnosed with FM on top. I still have a bulging disc, which isn't being montitored properly by Neuro team and my back is hell since the op (Morphine daily) so I'm wondering if this might be a path I should take?????. Can you please list the Clinic, Consultant and the full name of the tests, reasons for the tests and expected results or results when you have them. This might mean a bit of a break through and something a lot of us could try?. I too have developed quite horrific headaches (daily, sometimes with sickness - always starts with my neck area where there's a disc issue hurting like crazy), then it spreads up one side of my face and then horrendous headache. Sometimes I'm also sick and no I'm going to be as I get warning signs (watering mouth, stomach on washing machine spin cycle (and know the difference between this and my IBS pains etc). GP has prescribed me some tablets last wk to stop "migraines" as she believes this is what it is but can't give me anything else to help them due to the meds I'm already on. I can't understand why she just wont send me for another MRI / CT of my neck area to see what's going on as it's now 2 yrs since they last looked and I've still got pins and needles in both arms, dead arms and lots of pain. Why do you have to continually shout to try and get anything sorted. I've just had a lower lumbar MRI which I'm waiting for the results as pain getting worse in back and down both legs. I'm reading something up on the net at the mo (I know Dr's worse nightmare a patient who looks things up and tries to diagnose themselves) but I only 5 mins in with GP and my brain fog normally fogets half the issues I have. I have tried righting it down but then we can't make head nor tail of what my notes mean LOL!. Please keep us up to date with what they do or add me on Facebook and msg me please as yr symptons and mine seem very connected. I also see a Continence Clinic and have recently seen a consultant in this area (also had scans etc last wk at hospital) - they think it could be what they call irritable bladder (goes nicely with Irritable bowel LOL) - it's where you are over active, keep wanting to go, but not a lot there - no control over it. Sorry for taking over your thread - just seemed like me you were writing about and I don't have a sympathetic family so it's hard to discuss the new "Me" with anyone. Gentle ((huggles)) and extra spoons sent virtually to you. Sarah xx
Happe.could you send me some details as well.I have all the same symptoms as Sara but getting nowhere with my doctor. Am getting desperate for help. Spendingmostof my days in bed these days. Neck,face shoulders. numbness in feet and pins and needles in leg. Doctor just gives me painkillers and diazepam.Wish he'd give me a gun.
wow sa!you sound like me!iv had 2 discs &2 vertabras removed&screws etc in there place,nerve pains in legs,bum,footdrop from nerve damage&now FB!got appt.for neroligist in june!im interested in hapee blog,might be a break through?hugs x
Sara can so empathis with you. My doctor just doesnt want to know. Its all put dopwn toFM/ME/IBS/CS. Bottomof back on fire and radisting round into stomach and bladder. Feelas though I,m bursting to go to toilet but just ddo a little dribble but still feel inflamed and full. Only for having a family would end it all as doctor is of nohelp. Although dont get much sympathy from them these days; they always seem to side with doctor.
sarah i will do, i was dropped by my rheumatologist too last year but have asked my gp to rebook and she agreed and am heading back to guys fibromyalgia clinic with prof davis hopefully soon. i paid for a progressive mri of neck by professor davis and it was found i had a dysfunctional cervical spine, with two discs showing degeneration and compression of spine on flexation (which has been reported on too, see attachment). i agree it is an outrage we are left with little support medically and have to do our own research and enlighten even our gp's. my relationship with my gp goes like a roller coaster cause as you say they don't like being told. i would also recommend you read lyndseys ''how to become an expert patient'' on fibroaction blog above. i found it very helpful in how to manage communications with doctors.
all i say sadly at the moment is develop a thick skin. although it is an outrage, when suffering so much pain. as i keep saying don't hear of any other people with such debilitating illness being treated this way. i shout out often and clear on my facebook page. I will not be made to feel embarrassed by others ignorance. knowledge is all and i feel its our job to try and collectively make the difference. by whatever means we can.
i too have some family who don;t get it but thats' their problem. i have enough to contend with. however even my nearest and dearest struggled at times, but they see the suffering and now are being supportive. we still have a bad days, especially when i get irritable and tied of pain, which normally ends with me shouting at them. which tends to lead to escalate for a bit.
i will list my tests once i receive hospital letter with their medical terms, which hopefully won;t be too long.
i will upload the medical artical i was received from guys hosptial re medical research on cervical spine and fibro patients but will have to post this first as i don't see an attachment link here
send me a facebook friendship request and i will approve it. xxx
If more neurologists would recognise that Fibro is their kind of thing, it would be better for us! They have the skills, knowledge and equipment to better deal with Fibro - unlike rheumatologists who are often at a bit of a loss as it's so different to everything else they treat.
Unfortunately, it's really hard to get through to them - it's rare for neuros to come to professional education events looking at Fibro for example.
FibroAction are a member of the Neurological Alliance though and when they reproduce their publication 'Neuro Numbers' Fibro should now be included in that. Small steps....
Happe - re your headaches, has myofascial pain be ruled out/in?
not yet lyndsey, i believe this is part of it, but there seems to be a range of headaches going on with me. everyday i have severe headache, all different. sometimes, sinus, myofascial but also vascular in type to my reckoning. i will update you all soonest.
i was recorded as having one of the highest IQ ever at school yet as i told neurologist, i was as sharp as a razor, but now with headaches and cognitives its like the edge has been blunted.
well done with the neurological alliance. i know you are all working very hard and following all the right paths, for that i seriously am very thankful.
quick question ,ive seen a lot about neurologists ,how do you get refered to one ,and is it for everyone ?
i was very clever once not really high iq like you ,but i was clever if you understand me ,but now i cant spell ,my speech is rubbish ,i forget everything ,just a moment ago i was going to ask a question on here and for the life of me i cant remember what i was going to ask
having had five children i was a wealth of information to people having problems with kids /pregnancy problems ,etc i was like a mini manual for people who needed to know stuff
now i feel so stupid most of the time ,somtimes i just go blank ,and just cant get the words out lol ,sorry that was a bit of a rant sorry about that ,i started to ask a question and got a bit carried away xx
Hi Happe,It sounds as we are suffering from the same thing... 2 of the 8 conditions i have!...
I have lumber spine stonosis, where the vertabrae has collapsed onto my spinal cord and also trapped nerves oneither side causing the numbness, pins and needles , incontinence problems etc and i have spondalitis inmy neck which causes severe pain creeping up into the scull like a hot metal rod jamming into the brain through the front of my forehead! i can never lean on my neck or the base of my skull hence why i have to sleep in sitting position, i've been tld to look forward to stonosis developing in my neck... thank you doctor!..... my rheumatolgist said nothing he could do for me and so did the neuros!
i understand exactly how you feel.
I am very lucky i have a lot of support and care from hubby and care workers, but if you ever need to talk or just 'hear' a friendly internet voice feel free to message me love and hugs poppyxxx
hi poppy, you are truly a top Spartan Warrior (a nick name i focus on when pain is so bad), my headaches are multiple in type too, i also suffer from cramps, ibs, memory loss, poor word recall and when stressed find i say a different word than intended. i also send to misspell and frequently drop characters.
the stiffness and muscle pain are as complex as the headaches in type. i follow a strict diet of organic no processed sugars, no wheat, gluten or yeast. should i eat any of these things my stomach balloons to full pregnancy too. if i eat a heart meal it can be followed by severe cramps in the lower abdomen. so little and often is best for me. i have skin conditions which started on feet and hands but now on legs also. as they say each of us is unique and frequently can suffer lots of co existing conditions as well as fibro. , some of which are treatable, nothing upsets me more than the blanket doctors who views fibromyalgia as an excuse for lazy blanket diagnosis. you know the ones who don't want to carry out further investigations and the process of elimination, before they wrap up as fibro mite. we have to push for them so bloody hard, but when your driven by pain we have to. i just long for the day my turns and tell me something i have no already heard and taken to her first. so i am constantly going in armed with info. thanks to fibroaction etc. LOL Bet she hold her breath for 3 minutes before calling me in..but i don;t care. i do empathize to a degree for me are patients with complex conditions. that demand time and as they say time is money. but i bet if they were suffering as we do they would understand more and realise its a false economy not to engage with us. i wish there was a hospital department whom are geared up to deliver the wider remit of treatments that bring relief. i am sure that would save a fortune in the cost in the number and amount of old or outdated medicines being pushed about. a clinic were you could get access to the broader range of our health team needs easily and without having to fight for it or pay for it ourselves. the stress of having to cope with current medical state makes us all feel ten times worse. i am not maligning the huge efforts and progress fibro groups have made because we have all read and seen much is being done by groups and individuals. if it weren;t for them i really could not have survived the disrespect shown by some doctors and i truly mean that.
i was bought up with a strong moral belief in all people are equal no matter what their colour, or status and treat people as you would wish yourself to be treated. I will always show respect to any civil decent person no matter what their job role. i believe their is no excuse for ignorance especially of those whom should know better.
so you see i know i aint perfect, who is. their are truly few saints walking this earth. it has made the struggle of disrespect still shown in medical world so hard for me to accept.
anyway we are all a family on here and i just wanted to share a positive experience with everyone.
wow so interesting!iv appt.in june to see neuro,its same one my hubby saw&he wasnt nice!i hope he is nice to me
i know i say angry stuff through frustration on here some times but i have learnt diplomacy is always best policy with any specialists. i tell them my symptoms, i let them speak and i ask questions, then i genitally with my husbands support expound on how tough it is and then lead in to what i have read and then get out the print outs for this, ( i will struggle with the correct words during this time) and ask them for their view and then answer any discrepancies in what they are saying in a gental questioning way. i was lucky i had an appointment which for the first time engaged the neurologist and i see her as a good neurologist. i mean has anyone ever heard of the 100 question test? re state of cognitives? its a well established test the neurologist informed me. she asked why it had never been done?
i am forever thankful for the ongoing support and knowledge given by fibroaction and other groups including the world wide web, my advice don;t go in with too much. i asked my gp surgery for copy of all blood tests results for last year which for me showed a growing number of bacterial infections. a written list of meds and supplements, plus my gp details. this doctor appreciated our efforts. believe me this was a first for me re good consultation with a neurologists, as my previous encounters have been so bad i thought they were the most ignorant of all specialists, whom seemed to view themselves as the self appointed kings of the medical world.
most of all i am glad we have all been given this chance to talk together.
there are no existing support groups in my area so when i feel up to it i intend to start a local group too.
hugs to one and all, especially fibroaction for what they do and continue to do for each and everyone of us.
LOL meant gently!!! just reread my last post, third line. oh my can't even click on right spell check word these days ha ha :/
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Is this my life now? 
Just about had enough
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Finally only a few more days update
