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No less frustrating once you're diagnosed!

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

I am very sorry that you have become unwell again. That’s a blow, and no wonder you are feeling fed up about it for all sorts of very good reasons, the leisurely pace of the NHS not perhaps the most important of them. :frowning: It is very upsetting when neurological problems rear their heads after blessed spells of quiet.

I’m afraid the NHS wheels can grind rather slowly, but it is important to stick with the process so that everything is properly documented, particularly at this early stage after dx. Apart from anything else, the sooner you have a proper chat with the neurologist the better, it seems to me.

Good luck.

Alison

Hi st
I’ve had a similar experience regarding the MS Nurse and sorry you are going through the fobbed-off scenario too.

Once you’ve established with your GP that a UTI can be ruled out, can you contact the MS Nurse again and either request a face to face appointment or insist that she arranges for you to see the Neurologist a lot sooner than 6 months?

Alternatively bypass the MS Nurse altogether and ring the Neurologist’s secretary and say you need an urgent appointment. I would say that the Neurologist is the best person to advise on whether you are currently experiencing a relapse and to discuss the pros and cons of DMD’s going forward.

Kind thoughts.

E.

I have always found the so called MS nurse i saw a waste of time.I stopped going as she was never interested in what i was telling her.I think some are better than others though.

It could be that you’re Asymptomatic. I was admitted to hospital last year thinking I was having a relapse. Tests while in there showed I had a chest infection as well as a uti. I wasn’t showing any symptoms at all. If your urine sample has been tested in the lab and not just dipped by your gp or yourself, then try to get to see your gp. Either that or ask for a phone back from the surgery. (My gp happily does this if it is a quick query and doesn’t warrant a time consuming appointment).

Perhaps the gp could refer you to your neurologist by urgent request, or make a decision about whether it’s a relapse or not and write a letter for you to take to A&E? I’m only going by my own past experiences.