Hi, just a moan I suppose/looking for support. I was diagnosed extremely quickly around two years ago when my son was four months old and I had my first major symptommatic “relapse”. I was lucky to be diagnosed over a few months on the basis of positive lumbar puncture, symptoms and family history. I was breastfeeding at the time and we wanted more children so decided to stay off DMDs and see what happened. Neuro said that was fair enough, but another relapse within two years would be considered to be quite soon/agressive so he would advise I start meds at that point.
I’m fairly certain I am having a relapse now, symptoms which are new to me have been going on about 3 weeks so I dutifully phoned the MS nurse advise line, waited a week for her telephone appointment and explained what’s going on. Well despite having the diagnosis and being past the “gatekeeper” as it were I feel like I’ve just hit another one. She wouldn’t confirm if this is a relapse, just said she would write it in my notes and asked me to see my GP surgery for a urine dip to make sure I don’t have a UTI, and call back in a week if no better. I have no symptoms of a UTI. I do have a cough which I was honest about, but explained that the symptoms I am concerned over pre-date that by at least a fortnight. I hung up feeling pretty fobbed off and miffed to be honest. I don’t want steroids for this, as I’m managing and don’t feel I need them…but I guess I was hoping for confirmation that this is or is not a relapse and if it is then an appointment with the neuro to discuss what that means in terms of needing treatment at this point. I’m not due to see him for 6 months. I still would rather not take the DMDs as we are now trying for a second child…but I keep thinking back to his words on my first visit that my brain scan showed “I’d probably had MS for a number of years” based on all the lesions. So I’d presumably been having silent relapses for a while and could still be. I’m only 36 and in a professional job-I worry about what the future could hold if a major physical or congnitive relapse hits. I guess I’m just scared that I don’t know what’s going on and want some reassurance/a frank discussion with someone who will take my concerns seriously and not assume I’m being a hyperchondriac. This is only the second time I’ve called the nurse in two years- it’s not like I’m on the phone all the time with every little thing, but it just felt like she was reading a script.
I guess what I need to do it what she asked and phone back next week. Just feels very irritating! Any thoughts? Is everyone’s experience with the nurses “helpline” like this? My mum says she always found the same so gave up calling them as it felt pointless (different clinic).
TIA
It is very upsetting when neurological problems rear their heads after blessed spells of quiet.