hey Hun…hang in there…if your gp found physical symptoms then your neuro is a twerp for sure…why do they get that awful label out without looking at the MRI scans…has your gp a copy of the scan report? If I were you request a copy if MRI itself and report for you new neuro…def need someone more competent . also as you say eppy nurse backing and gp if you can. don’t go anywhere until you have a dx Hun…what he has told you is not acceptable …I would see the neuro psych and if he thinks you should not have been sent to him then he can write to your gp and state why… hugs em
Hi Nikki. I think you should stay here for as long as you need to be here. Nikki many people here care about you and lets face it we all visit for a little support, help and advice from time to time. Me well i just appreciate a cute cerebellum when i see one )))) Sorry for my little joke nikki but is that a smile i see on ya face now? You know Nikki i now know though my own experiences over the last 18 months or so that these neurologists don’t know half of what they should know and im sure they just “wing it” half the time anyway. Nikki hope you make the right decision for yourself and the newly elected president of the cerebellar appreciation society : ))))
((((((((((nikki))))))))))
Thank you all so much, I am sat here in tears it’s so good to know I’m not alone and others understand. I barely slept last night with it all going round in my head. Xx
Hi Nikki,
Do you really think all those physical probs you have been having could be ‘all in your head?’
No? Me neither!!
I went to my gp about symptoms and he smirked at me and said “I think you are a person who worries about having ms - you need to get out more!”
If i didn’t feel so ill at the time i would have knocked his head off his shoulders but i just walked away. I told my neuro about the same symptoms and he said “that is not possible”
I am still having problems getting them to believe me and i have had my diagnosis over 6 years ago, so its harder for you at the moment to get the help you need.
As you know via pm i have now been struggling with these symptoms for 18 months.
You know your own mind/body Nikki and you know theres something wrong.
I know i have a problem atm = they dont believe me - but something is stopping me from functioning properly. I have questioned myself many times - am i going insane? Then i come on this site and decide i need to follow my instincts.
Gritt your teeth Nikki! Make notes about everything you have been told -
PROVE THEM WRONG!
Then when you have your diagnosis (whatever it may be) - stick those notes in their face and say “so it was all in my head then???”
My diagnosis came pretty quickly so i have never really been in limbo - i was in shock instead!!
Neuro symptoms can be very strange and unless you have experience of them - you cant understand (even if you are medically trained). They quite often go against the ‘norm’
Hope you get the MRI results soon - but dont forget - if they are clear - it still doesn’t mean theres nothing going on!
Thinking of you,
Teresa. x
Oh i forgot to say - take your mum up on her offer of paying privately for the first appoint. It will get the ball rolling quicker.
They wouldn’t dare treat you as you have been treated so far!
Why? because you are paying!
Harsh but true i’m afraid!!
I can’t believe that! What an arrogant basket!! But you are diagnosed? What did they not believe? What were your symptoms etc? Would love to hear your story Treek. Dxx
Thanks Teresa. I just feel like I’m banging my head against a brick wall. Xx
Nicky dont listen to them… 3 weeks ago my diagnosis was the same its all in my head aparently but im telling you they tell everyone that who doesnt have lesion shown up on there MRI. My mum has ms and it took over a year to get a diagnosis because they sed its in her head but now she has PPMS!!! and a friend of mine had exactly the same ‘its in ur head’ and now she is bedbound!!! get a second opinion im doing tht!!xxxxxxx
Hey Nikki x you keep fighting & don’t you go anywhere xxxxjenxxx
Hi Deb,
I have sent you a pm. x
I have just received a letter from my eppy nurse. Her letters are normally very relaxed but this one was so formal I’m not convinced she even wrote it!
It basically said the MRI is normal and there is no physical cause for my symptoms so go to psych and get their support.
I am so upset I feel completely dumped and made to feel like a fraud.
Oh Nicki,
what an absolute nightmare for you! I was told that my MRI was clear of MS lesions and although the LP showed inflamation he didn’t feel it was consistent with MS. (His speciality is Epilepsy so it’s not his feild)
However he was lovely and has requested a 2nd MRI (one year after the last) of brain and cervical spine.
The one thing that he said to me that very much stuck in my mind is “just because we cant find anything now it doesnt mean that it wont show up later down the line…one years time or ten years” He kind of left me feeling that he suspects MS is there but that he wont label it as so until he is 100% sure…(quite rightly so!!!) However, I felt as though my world had fallen apart…my absolute worst diagnosis that I didnt want to hear that day was…“I’m sorry but you’re symptoms dont fit neatly into a box” !!!
If there is one thing i’ve learnt from this forum is thta symptoms are so vast and variable that does anyone EVER neatly fit the criterea??? I guess they must but I hope you know what I mean?
Both you and I know our own bodies, we need to keep fighting for the answers to help us function and LIVE a better life.
Pain is Pain where ever it is felt and all pain deserves treatment!!! MS/psycological/broken leg/ear ache/grief etc what ever it is!!!
I really do hope that you get some answers very soon and that you find some strength deep within to keep fighting but for know allow yourself to feel hurt.rejected/abandonned/ignored/sad/angry etc etc and when the time is right for you, come back at them with the might and fight of a piss*d off grizzly bear…LOL
Take care Nikki
Mandymoo xx
Thanks Mandy (Like the bear analogy have you been to a zoo today lol. bears and hippos!!)
Obviously I will be relieved if it turns out to be psychological but I just feel that everyone has made their minds up its that and dumped me. Even my husband has told me to stop being hung up on “the MS thing” and get counselling. I wasn’t even granted an audience with either of my neuros I was just kicked into touch by letter.
The thing is my GP said I have very brisk reflexes and marked weakness on my right side, could this be psychological?
I hope you get sorted out soon.
xx
Well I’m not aware of all your situation and history but would like to say there is no harm in seeing a counsellor. I was initially ticked of when I was told these symptoms are all in your head.
After repeated attempts by my GP to convince me that I should see a counsellor I gave in and was referred to the MIND team. They found no depression or any psychiatric cause for my symptoms.
It just gave me additional weight and demand that my GP take me seriously, he couldn’t say its all in your head anymore 
Hopefully things will work out for you and a cause for your symptoms is found.
Thanks fjear. I have an appointment with neuro psych in August for a different reason but may as well get it all out of the way at once lol.
I’m hoping the it will prove something one way or another. Just a bit fed up really how it can go from being told its likely to be MS to its all in my head almost overnight.
xx