Well I'm back from the neuro (after being in the room for 2 mins). Your fine your MRI is stable - we'll do an extra blood test for NMO but otherwise just get on with it oh and by the way are you a nervous person (only when I come for your appointments I felt like saying). Didn't ask or listen to what my 2 new epsidoes were. Taken the blood test (6-8 week wait for result). I'm going to ask my GP to refer me for a second opinion this evening. The neurologist may be clever and this may not be MS but I have absolutely no faith in a man that can't actually explain and listen to my symptoms. I'd cry but I have a clinic and it's not the answer (deep breath). Just so frustrated. I swear once I get to the bottom of whats happening with me I'm going to do something to make this situation different so no one else has to go through this stupid bureacratic system (Sorry vent done):-(
Sorry it didn’t go well, I know exactly how you feel. Sounds like we saw the same person!
Thinking of you
Sorry it was so useless. I'm not sure what it is about neurology that seems to attract an unusually large number of doctors who think they are Gods :-(
Why is he thinking NMO? This is from the 2010 McDonald criteria paper: "The Panel recommends that this disorder should be carefully considered in the differential diagnosis of all patients presenting clinical and MRI features that are strongly suggestive of NMO or NMO spectrum disorder, especially if (1) myelopathy is associated with MRI-detected spinal cord lesions longer than 3 spinal segments and primarily involving the central part of the spinal cord on axial sections; (2) optic neuritis is bilateral and severe or associated with a swollen optic nerve or chiasm lesion or an altitudinal scotoma; and (3) intractable hiccough or nausea/ vomiting is present for >2 days with evidence of a periaqueductal medullary lesion on MRI."
Good luck with the GP!
Sorry this appointment did not go to well - am I right in thinking you were hoping to be referred for a LP?
How do they know you have had inflammation in your spine? was this picked up at previous MRI - the reason I ask this
is my tale slightly overlaps this in as much as all my problems started after a horrendous infection which left me very ill for weeks - I have had brain MRI and about 5 months ago spine mri but nothing found this was not done with contrast and neuro thinks TM as inflammation could have healed as over a year ago. He suggests appt in 6 months to see what develops. Seems alot of them have the attitude of lets hurry and wait and see?
I am getting round to thinking a LP is the next piece of the puzzle for me - although I am slightly against I think it is a vital clue not to be left out. You say you are seeing your GP in the hope of a second opinion - I wish you well, I have lost faith in my GP and only see her when necessary to get more amitriptyline - I think you are lucky if you find a GP who listens and believes especially after the length of time I have been in limbo. I have seen 3 neuros - in my area there are 3 main hospitals and certainly two of them share neuros so choose wisely if you get a second opinion.
Thanks alot ladies. I really hope the GP listens. Its just not right that so many of us are left to just manage on our own with no idea of whats wrong with our bodies.
@ Nikki - exactly what I thought when I read your post yesterday (sounds like my neuro)
@ Karen - no MRI features consitent with NMO, no optic neuritis, no nausea or vomiting. I think he's pulling stuff out of thin air.
@ SH. I will definitely have a look for neuro's around my area to make sure they don't know each other or work in same trusts.
I was hoping he'd send me for LP or at least some EVP. I have no help, no meds just a stamp to say get on with it. Don't know how willing my gp will be to refer on but I have to try. Oh and incidentally my spinal MRI was normal but my brain MRI showed some subcortical lesions ? uncertain significance.
My neuro may be medically qualified but he hasn't listened to be able to make a good judgement on whats going on. 2moins is not enough - I give my patients longer than that for something that is less troublesome/important in comparison to the symptoms we have.
Thank you all again.X
I’m so sorry you weren’t given more respect than that. Many specialists do seem to think they are higher above us mere mortals - I wonder why they went into their profession in the first place if it wasn’t to help people!!
There do seem to be a shocking number of us who have bizarre neurological symptoms mimicing MS but apparently nothing wrong! They’ll probably discover a new illness one day - I think that’s actually what Jon Stone’s functional research is about.
Exactly Debs - I work in the same trust. I have some knowledge about things and he's still treating me like this. I hope they do find something new- at least that way people like us may finally be heard and get some answers.