After waiting 5 weeks for results of MRI my letter finally arrived today, and I am so angry and upset. I had an episode of ADEM in 2014 which was treated with IV steroids. They explained that it was hopefully a one off episode for whatever reason and with any luck would not reoccur. I remained mostly symptom free, apart from some pins and needles for about 18 months. Then in April of this year I started with spasms to both hands, fatigue, headaches, pins and needles to both hands and my right thigh, and pain behind my right eye. I attended neuro outpatients was commenced on Gabapentin, referred to fatigue clinic and MS nurse and booked for another MRI. So I was hopeful of getting to the root of things. When th letter arrived today it was good news in so much as the scan was normal, but the thing that upset me was that the letter was so dismissive. It contained inaccuracies, the date of the scan was wrong by 2 weeks and she said I had complained in clinic of headaches, no mention of any of the other symptoms. She concluded the letter by saying I had not attended clinic for 18 months out of my own choice and therefore if I remained stable she would discharge me . . . .I am not stable, I am anything but. I in fact had a clinic appointment last october which was cancelled by the hospital and rearranged for January of this year. I attended that appointment even though at that time I just had some pins and needles. I have a letter that they sent me following that appointment.Then when all the new symptoms started in April I requested my next appointment be brought forward. I was seen in August and todays letter is the outcome. I am a registered nurse, have spent 37 yrs looking out for others and was hoping for someone to listen to me and take me seriously. Where do I go from here ? Great if it’s not MS but there is something not right. I have drafted a letter of complaint which I intend sending to the consultant. Sorry for the moaning but I feel so angry.
hi
what about writing to PALS?
it’s no wonder you’re annoyed i would have developed tourettes!
good luck
carole x
I had a similar experience to you in that 2012 I had a massive bout of transverse myelitis, and hoped it was a one off. My MRIs were clean at that point. Sadly I relapsed and got passed around a bit with ME diagnoses but I went private to the very best neuro I could find this year and he seemed to be really interested and totally reviewed everything that happened to me and then referred me back to NHS for fresh MRIs and testing. I feel terribly sorry for you but you have to take control because sadly a few medics just think you’re a depressed middle aged woman. The weird thing was I’d gone till age 44 going to the GP once or twice a year before 2012.
Kick ass x
Hi I am confused, how did you get referred to an MS nurse if you were not diagnosed with MS? That makes no sense to me at all, it shows that on your notes somewhere it says MS.
This happened similar to me, way too long a story, but i was taken into hospital again with memory loss (I have TEA . transient epileptic amnesia) and was finally diagnosed with MS in February this year, anyway going off subject, when i was in neuro ward, the rather dishy neurologist said to me in 2015 I could address your TEA myself and start the ball rolling with treatment but i think i would rather leave it to the Doctor who is dealing with your MS….
Now thankfully my friend was with me at the time and heard him say that. So they were treating me for MS all along from 2007, but because the pieces of the puzzle were not all in place they were not able to give me an official diagnosis, i am convinced of that. Weirdly enough i am not convinced i have TEA, but that its part of MS these weird memory seizures as afterwards it seems i had a VEP test which took 3 months to get results which proved positive i had MS as once again it was positive for slowing down in the left side of my brain or whatever they call it and the time before that in 2007 january when i had another long memory loss, 3 months later i had a positive VEP test in both eyes.
So i would ask for your notes. It cost me 50.00 and i found out a few things, like for instance from the neuro to my GP he mentioned over time THREE different lesions in different parts of my spine, but i was only ever told of one.
So get your notes, and ask to be referred to an MS specialist. This just doesnt sound right to me.
Oh and i think age has something to do with it. I am convinced.
I presented in 2000 i went BLIND twice. Was dismissed as NOTHING, just perhaps the heat or low blood pressure i kid you not. I was aged 49 at the time.
Now i am sure if i had been young in late twenties mid thirties, this main symptom would have been treated differently, as since i have read that blindness and ON is one of the first stages of MS.
Even my first MRI of brain in 2006 which i paid for showed a large cluster of deep white matter high signal foci, and it was dismissed as could be demylinating disease, but more likely MY AGE as the date of birth was 1951. I still have the copy of the letter from neurologist. This MRI was sent to my uncle by my mother in Italy as he is a radiologist and he told her i should have been investigated from that brain MRI with MS as they were all active high foci, and of the correct shape for MS, and it shows that afterwards i had positive VEP in both eyes with slowing down in my brain, which could have meant MS plagues were invading that area. Again if i had been born in 1974 i expect i would have been diagnosed then. As it was i had to wait 10 long years.
Sorry its a pet hate subject of mine, the way we get treated like depressed old women, and dont get taken seriously. I was working all my life, hard work loved every minute of it, it was like loosing a limb when i had to stop work because i wasnt taken seriously in 2000. I might not have ended up with a diagnosis in February 2016 of progressive MS.
Thanks for the replies. Good to know that I am not on my own in feeling like I am being treated like some crank who is imagining all these symptoms. I have been on to consultants secretary for email address and when they read my email I hope they have just a little understanding of how frustrated and angry I have been left to feel. Good to be able to vent frustrations on here. What a smashing crowd of helpful and supportive people you are. xxx