New here!

Everyday living
1

Hi everyone,

I’ve been lurking here for the last couple of weeks, trying to soak up all the information and advise you lovely peeps post, but felt it was time to come out of the closet, so to speak!

My story (will try and keep it brief!) is that on the 2nd April, my vision went blurry. Went through all the usual tests and was told it was ON (over the course of the next 10 days, I went completely blind in that eye, unable to even see the lights every doctor shone in them), an Ophthalmologist that told me it was ON, there was nothing wrong with me - my vision would return in time, and wasn’t interested in referring me to Neuro until I mentioned I get a numb leg occasionally. I was referred to Neuro, and for an MRI. Had an MRI early May, and an appointment with a Neuro at the end of May.

The consultant did the reflex type tests, and said that I was pretty much normal, perhaps a little delayed with my right arm. She then said she wanted to refer me for an MRI and blood tests. I happened to mention that sometimes when I wake up, I can’t move. My chest feels like I’ve been crushed, and is agony for between 30mins and an hour, and still seems ‘sore’ for a while afterwards. She looked really concerned all of a sudden, and said she wanted me to have an MRI. Luckily my GP had already preempted this and ordered a few that the neuro needed, but I still needed others. My Neuro hadn’t been sent the report for my MRI, so she didn’t realise it’d been done. I told her, and she found it on the system. She said she’d have a look, but she would prefer a report from a Consultant Radiologist. She went through about half of one of the ‘views’ of my brain, and there were about 7 or 8 leisions, one looked like a large one (probably about the size of a 10p piece? Of course, I am probably remembering it as worse than it actually was!). I went through a few other things, and told her that I’d always put my issues down to being overweight, or unfit, or sleeping ‘funny’, or this, or that… I got told I shouldn’t ignore these things. Thinking about things, I think some of my symptoms have been around for years.

I don’t think my Neuro has the same sense of humour as me… She explained that, ideally I could do with losing some weight (I could do with losing about 4 stone in reality!), in case my legs became weak in the future. I pointed out to her that if it does happen, I will lose weight naturally, because I won’t be able to get to the fridge… Yeah… My sense of humour gets me in trouble sometimes… Her face was a picture…

My current diagnosis is ‘Probable MS’. She told me she would write to me to advise if I should take vitamin D or not after she has the blood tests back (9 tubes of blood! And that was the 2nd test! Never had that many before!), and wanted me to see the MS nurse. I’m still waiting to hear something, and I’m guessing these things probably don’t happen quickly. I really want to discuss all the possible symptoms I’ve been having (I get fatigued easily, and always seem to need a day to ‘recover’ from things. Have been putting that down to ‘fat and unfit’ for the last year or so… Also, I feel I am getting more forgetful, and often stop mid-sentance because I can’t remember what word I need to use next…), and I want to find out about the possibility of DMD’s, as it seems from posts on here, the earlier I start the better…

I guess the fact that I’m only a ‘probable MS’ at the moment makes me a ‘limbo-lander’, although by the fact she’s referred me to the MS nurse suggests she’s pretty confident to me, and is just ruling out Lupus and the likes with the blood test… I’m hoping I get to see the nurse soon, as I have so many questions, and don’t know who to ask, or where to get the info. I think I’ve done the emotional roller-coaster bit, but in the matter of a couple of days, so in reality I don’t think it’s really sunk in yet!

Anyway… Thanks for reading, and thanks for all your posts. They’ve been helping answer some of the questions I’ve had over the last couple of weeks! I will be trawling the forums for information and guidance for the next few weeks!

2

Welcome Loretta it’s a wonderful life from reading your post it seems to me you have taken and will continue to take it all in your stride. Don’t expect too much from your Nurse like everything else there are good ones and not so good ones. There are some good DMDs these days and I’m sure you have been reading the various threads about them. If you are offered them take your time deciding which you want or even if you want them. I was never offered DMDs as I didn’t have or didn’t report sufficient symptoms (relapses) to warrant them. Does a six week stint of pins and needles count as a relapse I just ignored things like that and got on with my life perhaps if I had reported everything I may have been given the choice of DMDs. Start a list of the things you want to ask. I have had symptoms for approx 23 years and it is only the last year that it has prevented me from working, hopefully your MS will follow a similar if not better pattern.

Good luck

Jan x

3

hi loretta

welcome to the fun factory of ms- its a blast!

your symptoms sound like ms, but as you’ve worked out, getting a firm dx is a job in itself.

persist for answers, take note of your symptoms as they occur on a daily basis, get rest, and take note any questions you need answers to (as jan wisely says above)

take care fluffyollie xx

4

Hi, From my experience you are allowed to have a follow up MRI 6 months later after your first MRI to check for new activity. If you have more symptoms this could bring the second MRI forward.

If there is new activity on your second MRI scan and you fit the criteria you can get DMT’s. But you can also request an injectable DMT with a diagnosis of possible MS. Also known as CIS. For CIS I think the choice is Rebif.

5

Morning Loretta and Jan and all. Just wanted to say welcome to the Forum, Loretta. It has helped me a lot too.

Your story is not a million miles from mine, and my diagnosis started last October. The first neuro I saw (not an MS specialist, but a general one whose speciality is stroke) told me to start on Vitamin D as soon as he suspected MS, and referred me to his colleague who is an MS neuro. They suspected MS and it was confirmed by MRIs, blood tests, evoked potential tests and lumbar puncture. I got confirmed diagnosis of RRMS at the very beginning of January. And the neuro thinks that I’ve probably had it since 1997…

Will you be seeing a specialist neuro at all, as well as the nurse? I would suggest making a list of all these annoying symptoms that you’ve shrugged off for years (I now know that mine are due to MS) to take along to the specialist MS nurse. It’s a’ joining a club that you never wanted to join or thought you would join’ thing - well, to me, anyway. It is a huge learning curve, and has taken me months to come to terms with. I’m managing well, and on Tecfidera, but I’m only just learning to ‘cut myself some slack’ when I have one of the many niggly symptoms!

Come back on here for support, if you need it!

Best wishes Louise

6

Hi guys!

Thanks for the warm welcome!

I think I’ve taken the news better than most people. I’ve had a lot of ‘OMG! I’m sooooo sorry!’ type replies, that just annoy me for some reason, and other people who are much more down to earth - the ‘Really? Well, you’re a strong person - whatever life throws at you, you’ll cope with it, you always do - and I’m always here if you need anything’ replies which are more what I need. I guess I don’t want the pity. I’m fine, it’s not holding me back, I am still the exact same person as I was a month ago, it’s just now I know something new about myself!

My neuro isn’t an MS specialist, from what I can tell about the write-up on the hospitals website. She’s ‘general neuro’ and specialises in ‘epilepsy management’ and ‘neurogenetics’ (I guess I can’t name names on here!). She comes across as really proactive and positive, but I’m not sure what I should really be expecting, so perhaps it’s a false perception! Not been told to take vitamin D yet, as she wanted to check my current levels, and my calcium levels first. She has already given me an appointment for a years time, and has explained the nurse will sort an appointment if I need one sooner. She also said I will always see her only, and not one of her registrars. I haven’t been referred for any other tests, and the MRI wasn’t done with a contrast, and didn’t include my spine. I see other people have a barrage of other tests, so I’m not sure why I’m not… Mind you, I don’t mind giving the LP a miss!

I’m already writing any symptoms (or possible symptoms!) down each day. Need to start doing the same with the questions. I would like to have a date for seeing the nurse, although I understand I can apparently call/text/email her at any time, and the consultant told me if ever the nurse is on holiday and I have a concern or question to contact her through her secretary. I really can’t fault the care I’ve received from Neuro so far. Ophthalmology is a different matter! One consultant/registrar (not sure who or what he was!) made me feel like they didn’t care, didn’t want to explain things to me, and just wanted rid of me as soon as possible… I guess that as it’s a nerve issue, they weren’t really ‘interested’…

Glad to have joined this forum. I am sure I will need to ‘talk’ about things with other MS’ers over the next few months/years, and it’s lovely to have somewhere to do so!