1st appointment after mri results
So i finally had a face to face appointment with my neurologist after I’d received my mri results via phone call. After finding multiple lesions on my brain and lesions on my spine in my neck I’ve been diagnosed with CIS. My husband and I attended the appointment yesterday, I had thought of other symptoms and occasions of numbness that I hadn’t thought about until I’d been given the results and then you start to think back on things. I had a big episode in March that lasted for weeks which is what kick started the discussions with the doctor and then the referral to the neurologist and then subsequently the mri. I came out of yesterday’s appointment frustrated and angry where as my husband came out all happy and thinking everything’s fine you don’t have ms. I felt that everything I’d mentioned to the neurologist just got ignored and not taken seriously, he just said you have CIS not ms you may have more episodes and you may not. I’m currently seeing a gynaecology physiotherapist for an over active bladder I’d discussed with her about the mri results and she thought this was interesting as she didn’t think I present as a normal overactive bladder issue if that makes sense she feels that it is a result of the neuro issue, so she typed up a letter for me to give the consultant at my appointment which I did, he didn’t bother to read the letter he simply said their a physiotherapist I think you need to see a doctor to which I replied i have a urologist who referred me to her, oh was the reply I got and that was it. I also got asked if I’m highly strung, as a nurse I fully know what is meant by that comment so I said no I’m not and I also don’t imagine symptoms which quickly shut him up. So at the end of it all I’ve been advised to notify dvla of my condition and referred to an ms nurse even though according to him i don’t have ms, and he’ll see me in a year but to contact him if I have an episode that lasts weeks to months and the symptoms I get daily of the tingling burning stinging feeling won’t go due to the damage the lesions have caused with the episode in March. Have other people gone through this crap? Sorry for the rant but I just walked out more frustrated than ever lol.
Hey - I’m so sorry you’re going through this. I haven’t had the same experience as I was diagnosed with transverse myelitis and CIS last August and this was changed to MS in January following another MRI which showed new demyelination. So the diagnosis was pretty fast in the scheme of things but it’s been since diagnosis that I’ve had to deal with crap I wasn’t expecting. I was told by the MS nurse that I didn’t qualify for treatment despite my diagnosis as If I wasn’t bad enough which sounded weird so they took a watch and wait approach until September this year so another 9 months post diagnosis. I’ve now been offered treatment but definitely these past 7 weeks I’ve been having a lot of new very bizarre symptoms and due to my MRI in august looking semi stable they seem to not believe me and act as though I’m highly strung or anxious even though it’s the symptoms and lack of support making me feel worried. I even ended up getting shingles recently which I think was due to the stress of getting nowhere. Finally they’ve said they’ll see me tomorrow so fingers crossed. But definitely have found that after diagnosis it’s almost like you have to then prove you feel your symptoms unless it’s a severely bad relapse tbh it’s exhausting and I hope it gets easier. X
Hi, its so frustrating isn't, not getting answers and help. Its been a battle for me too. My first symptoms were numbness. Multiple leisions, are they specific to ms? I have lesions on my brain and spinal cord but also lesions that are non specific- these could be due to the migraines I use to have or the b12 deficiency. Not all lesions are ms related. Have you had a lumbar puncture? Hope you get some answers. Its not fun feeling like crap.