Hi everyone
Joined a little while ago after results of my mri showing significant changes and a subsequent urgent referral to neurology for November.
Ophthalmology have today confirmed that these changes are representative of ms I knew potentially this was the likely changes seen. I’ve had worsening optic neuritis in bouts for 10 years and over the last 18 months worsening fatigue, muscular pain, pins and needles, weakness headaches and clumsiness which my doctor put down to depression and weight gain and prescribed codamol which most days does not really have much effect now.
I guess in a way I’m feeling relief I’m not going crazy when I tried to tell my gp I should not be having these issues at 34/35 and was dismissed even after my leg weakness caused a fall and a hospital admission I have only got this far due to the optician referring me to ophthalmologist who run his tests which confirmed my left side visual field is poor and actually listened to me and referred me for a urgent mri.
I am terrified too for what is to come I’m a mum of 3 with my youngest aged 6 and also 1 with autism, my husband is fantastic never complains but it’s such a huge amount for them to all be dealing with. My girls know I’ve not been well and I am having various tests but despite my elder ones asking I’ve not yet said anything on what test. Is this the right way or should I be honest with them?
I have to await my neurologist appointment then have 3 month checkups with ophthalmologist to monitor vision changes. I’ve also had some bloods done already but still awaiting results apparently only 1 lab in the uk is able to test them with the results wait around 2 months which is probably why my first appointment is not until November. I’m keeping a log of my symptoms everyday which I’m hoping will help. Can anyone please advise what I can expect to happen at my appointment and what to expect next, is there anything I should do in the meantime or ask at the appointment?
Thank you for reading I know I’ve waffled a bit 
The one-lab-in-the-UK thing rings a bell - something rare to do with eyes isn’t it? If so, I got tested for that too and don’t remember anything else about that except that I didn’t end up having it, having, as it turned out, the much more common garden variety RRMS instead.
Your GP doesn’t sound like a ball of fire. I’m glad you finally got someone a bit more switched on to take a proper interest. It’s all taken an awfully long time, and you’re not there yet, but at least you can sense the wind is blowing, so it isn’t going to be a massive shock if you do end up with an MS dx.
The main part of the MS Society site is an excellent source of information about the condition and also treatments etc. Worth a look, if and when you can face it. Finding out a bit about it can help inform your questions for your medical advisors. I am sorry that you and your husband have such a lot on your plates.
Thanks Alison I’m not 100% what exactly it’s for but think they are called aquaporin and mog antibodies tests
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Hi Kim785. I can only tell you what happened in my case. It’s around 17 years ago now so I can’t recall exactly what happened but the consultant basically had a look at the MRI scan and asked me a few questions about symptoms and from what I can recall that was it . It was fairly quick and not too long after that I was prescribed Avonex - weekly injections. I do remember that the time between the MRI scan and seeing a consultant did seem a long and very frustrating time ( just not enough MS consultants) but I can’t remember how long. Again I can’t remember the exact times but after the Avonex prescription someone came round to the house to show me how to self inject. I used to get an annual session with the consultant but it then changed to sessions with the MS Nurse leaving the consultant to deal with complex or changing cases. Thus was all around 17 years ago. I do now struggle a bit with my right leg and use a mobility scooter for anything more than say 15 perhaps 20 mins of walking but generally I’m not too bad. I know everyone’s case is different but in my case me worse fears have yet to materialise. Very happy to answer any questions you might have . All the best