Fibromyalgia Action UK
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Brain scan to come but dissapointed silly me!!!

when seeing the Neurologist i was kind of upset but yet i should feel relieved...not!! i know my body better than anyone and teh ONLY reason i have not been diagnosed with MS is because i do not have a 'pattern'!! hang on from 2yrs ago going back and forth to doctors and things moving round my body and things lasting months, wks or days and now to a stage each day is different and things i had last year are repeating themselves this year and the flare ups are to a state i cannot do anything so disabling!! Friday i ran around in car wiht work but i dont even know how i got out of bed and started the day! i am so weak on my left side especially when doing chores it makes it worse? anyone else have these problems? and it will have its days where i wobble so much i cannot walk without using something. So now waiting a Brain scan...NOBODY wants a disease or bad diagnosis i want to recover!! but i do not think after 2yrs of hell on and off i will .there is past history too from over 20yrs which after browsing sites this year all end up with MS but yet fibromyalgia is also on the cards since they are similar. I have some hyperflexia or something like that i am getting days i am not very mobile. but days when i can perfectly get about just doing the shops etc is so hard!! i constantly need to hold myself up does this all make sense. I kinda want the brain scan to show something to show that its there.. he could see that after asking me to stroke one leg on the other was nearly nil! and when got up my left leg was wobbling badly my brain is sending all the wrong signals and i cannot be operated on as my discs are too close to the vertabrae hence why i have disc pressing on spinal cord and compression to nerves in both sides..he said it would be 90% risk of paralys...why can they not just move it so all this vanishes?? would i be mad to demand surgery to do something and thake that 10% risk? i know ppl have surgery why fobbing me off .. thats why i love this site because i suffer so much and so tender to touch every single part of me! i get a horrid band around my neck and have swallowing problmes too ..sorry everyone i just so eaten up by it all day in day out it takes over your life all this nerve stuff and mobility xxxx

5 Replies

I had spinal cord compression (not disc related but inside the spinal column) and it was operated on last year with a fusion at c4/c5. My symptoms beforehand were very similar to yours but it took 5 years to get to that point. My MRI showed 3 'lesions' but the doctor i saw was insistent that the symptoms I was experiencing were in my head and i was just a sad woman who was not happy with her lot in life (yes his exact words) and the lesions were smoking related! he rang a week later to apologise and told me he had looked at my neck mri and he was referring me to a surgeon. I saw thankfully one on the most competent doctor I had seen to date and within 6 weeks I had the surgery and the difference was unbelievable and instant. even though i had had the surgery the pain was gone and as a result I made a very good recovery and it is only now nearly a year later that some symptoms are returning - it was as if one problem dealt with meant they could find what symptoms were still occuring. I definitely have FMS and probably one or more of the other auto-immune diseases but until they operated they couldnt decide what was causing which symptom. I still have little niggles from the surgery after all the disc was removed a cage and screws were fitted but it is so much better. that weight constantly on my shoulders went straight away. Surgery is a tough choice to make but there other thing you can do to straighten your neck to relief the symptoms is neck exercises to strengthen the muscles (and this does help)


Hia thankyou for your reply and i am sorry how you had to go through rough and be treat that way! that is just the pitts! I have no idea on this earth how anyone can say your symptoms are in your head!!!! that riles me so badly lol and i am so patient and friendly and laid backish.. How can a person go from hving nothing to complaining of so many things! I would give anything to be jumping on trampolines with the kids again and running around well my youngest is 11yrs old now lol..

so what would you think about surgery? if it has slowly brought you symtpms back and now fms is it worth it really. they may say 90% risk of paralys but my body says 90% want it i may beablet o get back to normal.

i had hernia op and ended bed bound for over 2wks could not do hardly a thing even getting to loo!! throwing up etc. Rushed into hospital scan after scan. I was sent back to theatre and i had a nerve wrapped around a screw on the opposite side of entrence to the surgery. since then i had this band around ribs and back for months! affected my work physically so gave up and employed some help then my neck went 3 times and MRI showed the discs on spinal cord and compression on nerves.but it should only be on one side and its on both! then i would have other symptoms but we all just thought neck problems and now after rheumotology and pain management and neuro surgeon and neurologist it is said i can not be operated on because of vertabrae i dont really understand! there is a very high risk of paralysing me he said so that scares me even more and makes me more uneasy?!! to do with where positioned. no wander i dare not do the things i once enjoyed. then there is the other mobility issue and i have a straight neck not curved lol hmm . the more i do the more i need to sit down. i said before long i will need an automatic car! i have to wait for every moment to take foot of clutch cos leg feels awful. i struggle peeling potatoes and simple things like taking washing out machine and folding etc . Sorry wales going on and on lol xx just frustrated with it all. I hope the brain scan can shed some light. I am been sent to a top brain specialist in uk if comes back fine. Well this is what the Neurologist said and i am on NHS not private!. xxxxxxxxx i really appreciate talking to some one who has an idea what its like every day with nerve pain in hands and the body how it feels and the mega bad heads too


hi and so sorry you are and have been suffering so lon i do hope tha you get the diagnosis you need to help youget on in life with whatever you want to do and get the aids you need to help you throughyour daily life thinking of you diddle x


Hi Hunny, wow that's a lot to answer on. I have scoliosis, diagnosed at 16. My parents were asked if they wanted to me to have some kind of operation to fix it, but they said no. Anyway even before I started to get ill my back was giving me numerous problems, standing, walking ect. Anyway I've been feeling bad with pain, electricity sorta going round my body, numbness, flare ups, hot and tender muscles, tiredness, various other things which bother me on a daily basis. Anyway I had loads of tests, a cat scan and an MRI scan. I too wanted them to find something there, just so they could say, well yes actually you do have an illness, or at least to say that I'm not making it all up. Nothing was on the scan, but I know my body and what I'm feeling everyday. They said it was all in my head first!!! I can't walk much now, rely on the use of a wheelchair when I go out, struggle walking in the house even with a stick. My husband is my carer because I need so much help even around the house. I've got a pain management apt next month and I'm loads of tablets. Some days are better than otherts. But most days its hard to just carry on, most people will know what I mean. I have a motto which is "It Could Be Worse". I'm so grateful that I have wonderful family and friends and I've found a lot of help from this wonderful group, just knowing that there is someone experiencing the same thing as you and your not mad! Lol, I just hate sometimes when the doctor sort of makes a decision about you before you've even sat down to talk to him, but I took along every single piece of information I could find and got my husband to write stuff down too. My short memory is a big problem for me, postit notes are constantly next to the phone!

Anyway I guess I just wanted to say that I'm here if you ever wanna talk, for support or just a moan lols. Seek comfort from us here, we all know what it's like.

Big hugs, much love, take care



thankyou babebasista ? gosh a thing to remember already!

i really do appreciate that you believe in me too, today alone i feel arrrggh cos my hands are so painful and throbbing!

I just cannot get my head round the conditon you are in and your hubby a carer and no true diagnosis so how on earth are you supposed to get support?! and belief from others.

You think like me 'it could be worse' but end of day 'WE' are suffering (i am no where near your disablity) but i do find it so hard at times because i look extremely 'normal' i am a very slim petite 43 year old which 2 yr ago was diong the splits dancing round poles and flipping over backwards! it all started from a hernia operation and i have never recovered and i think when i do go out and walking about (with great concentration and cannot think of all the shopping) 5 mins out and about i just want to turn back and come home, yet i want to go out and give it ago! i do have a stick and too embarrased to use it! this is becaue of my neck, spine base of my back and scared of staggering or tripping! i have to go the bank regular to put my chqs in and there is not much to lean on stood in the que and i fidget fidget all the time i put my hands on this post which has a elastic stretchy but even on the hands with everything tender is a chore, i feel people look at me because i drive and look drunk! that worries me a lot but i am fine driving most of time is just my left leg feels horrible and putting on the clutch is annoying.

Yes i DO just want it to show something so for me peace of mind its not them thinking its in my head as i been reading some stuff where because of so many fraudsters out there they seem to judge too many!

LIke you i KNOW my body and what am capable of and could not fake if i tried and as soon as i have any burst of energies i try to get things done and then i am quickly put back on the sofa!! it is very frustrating. Cannot imagine for you from 16!

I have had problems of illnesses through childhood and teens but on and off so you just thinlk.. its just another illness like a cold that will go away!! This will never leave me now i believe that and so i have learnt to live with it.. I have no idea now what it feels like to have a 'clear head' or a ailment free body without stiffness, weakness numbness, tiredness. had speech problems too or i will think something and something completely different comes out of my mouth lol ..i just think EH?!>! thats not what i was going to say .. we often laugh things off now as i find it easier to cope with when i do silly things. I have fallen out of shower which i put in to make life easier for us all. but no chair in it so i now have hairy legs hahha.. i have an extremely supportive hubby!! but he does go overtop sometimes as if i cannot do anything when i can.. but ya know taking washing out of machine a chore because of shoulders, neck and bending. even my jewellery which i love wearing is becoming annoying as feels like weights pulling on my neck or round my wrists it just aggravates the nerves more? .

sorry Babs i can type as fast as i think (the good thing i have)

The Neurologist and neuro surgeon have both said 90% high risk of paralys if i did have surgery so that scares the doof out of me and makes me even more less confident out there incase i fall etc.. all from discs pressing on spinal cord!! but its to do with vertabrae and something to do with how weak my bones and muscles are and said i have to live with it! I want to expand my tiny little business but he said there is no reason you can't ! i said how i cant physically do it i have had to employ girls who i chauffeur and check work and up and down stairs (which can be a problme) talk to customers when myhead is just not in it and like they go rite through me (not in a bad way)! but i just want to flop lol ...

Thankyou so so much for listening to my long long winded moan now my hands are absolutely ouching me eek .. I am here too to listen to you and just let off steam i am a very good listerner and wish i could get to gether with foilk in same position xx Once brain scan and if clear brain specialist i want to do something to help others and so everyone can understand as i never knew anything like this until it happend :( xxxxxx soft wooly cloud hugs xxxxxxxxx your are lovely


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