Home » Forum home » New diagnosis and before diagnosis

New Member

8 posts / 0 new
Login or register to post comments
Last post
New Member
Author
Post
Tantar
15 Sep 2011 at 9:40PM
Top

Hi

I am new to this website and hoping it will give me a chance to draw on the support of other people and their experiences :)

I very new to all of this. I was diagnosed with MS in March this year. It all happened very quickly, I felt my left arm starting to feel lazy towards of february and then it got worse to claw hand and my left leg being clumsy. Within in a week of seeing my GP I had an MRI scan on my neck as he thought disc or nerve problem then I was called back for a head MRI a week later and a week after that got my diagnosis. I have not suffered with anything like this before or anything with double vision etc so came as a rather large shock. I was tired but then I work full time with two children so thought that was reasonable.

My MS Nurse is lovely and has been very supportive and I am very lucky to have excellent health care where I live.

Hope to get to know you all better.

Tracey

Daver79
15 Sep 2011 at 10:31PM
Top

Hi Tracey

I just wanted to say hi and welcome wow you beat me hands down on a quick diagnosis i thought i was quick in less than a year. If you feel you need to talk about anything feel free on here we are all a good bunch who will help you and also use the site it has lots of helpful info

Hope to hear from you again

Take care
Dave :)

Tantar
16 Sep 2011 at 6:42AM
Top

Thank you. Im not sure how to feel about quick diagnosis and I feel guilty that other people have to suffer for a considerable period of time before they get a diagnosis. I didn't have a lumber puncture as the specialists here thought that given my symptoms they could diagnose.

I had a MRI done in 2006 for another reason and lumber puncture done for another reason in 2007 but they were testing the measurement as opposed to the proteins. My MRI was clear but who knows if they had tested lumber puncture for protein whether that would have showed anything.

I am now on meds as had a scan 3 months after diagnosis and there were still signs of inflammation, although I was never given steriods. I bounced back by the time I saw specialist which I have been told is quick quick although I still feel my left leg wants to clump down when I walk, heels I don't feel safe in as worried left leg will give out and when I go swimming my left hand doesn't play ball. I have also noticed in last couple of months which I think I have had since this all kicked off that there is something going on with my eyes. I have mentioned to my GP, MS Nurse and Specialist and he had a look and couldn't find evidence of Optic Neuritis and said to go and have a full eye test and colour vision test. I had that done and optician said my eyes have not changed and my left eye is slightly different but not even enough to change my prescription! I also got every part of colour test right, I am really confused as to what it is and specialist said no need for steriods as having been sent my results he is adamant not Optic Neuritis!

Anyone else has this kind of thing? I am so sorry for such a long post.

Tracey

Carryonlaughing
16 Sep 2011 at 8:11AM
Top

Hello Tracey

I am not diagnosed. I've just had my first MRI. My symptoms are fairly mild.

I get problems with tired eyes sometimes. Get days where I find it hard to watch TV or go on computer. I have no real reason why this happens when it does but I just put it down to tiredness or something.

When I get it I find it best to go lie down and rest them and sometimes this helps. I don't know if this is similar to the problems you get with your eyes or not but just thought I share. It can last weeks then go back to normal.

Anyway nice to speak to you.

Jen :)

rizzo
16 Sep 2011 at 9:39AM
Top

Hi Tracey and welcome to the site :)

To be diagnosed with MS, the patient needs to have had at least two episodes of neurological symptoms. So I would guess that there is something in your past medical records that the neuro "counted" as well as the latest stuff with your arm & leg. So you don't need to feel remotely guilty about your quick diagnosis - it's probably been going on a lot longer than you thought! And if not, well that's just the way it goes sometimes.

Getting a diagnosis is always a shock, even when you're kind of expecting it, but such a sudden one must be more so! It can take quite a long time to come to terms with being told you have MS, but most of us get there in the end. If you find yourself struggling with it all, then counselling can be a great help - your GP can refer you to someone, and some of the MS Therapy Centres have counsellors; your MS nurse might help too. Talking to someone you can open up to is a great help. Same goes for your partner if you have one - the friends and relations of the newly diagnosed also need a chance to talk about it. They get worried and scared too :( One of the problems in the beginning (and long-term, for some at least) is being honest with loved ones. We're scared to worry them. They're scared to add to our worries. It can lead to a lot of bottled up feelings - not healthy! So talking is good. (Within reason of course!)

It's great that you've already got a good MS nurse and are getting access to meds. Is it DMDs (disease modifying drugs) that you've started? If it is, then that's extra great - a lot of neuros and PCTs are rather slow to get people on them even though it's best to get started early.

Re your eyes. There are actually a few things that can affect vision, and some of them aren't detectable by the standard eye tests that opticians do. So you may not have optic neuritis (ON), but there might be something else going on. The best way to be sure is to see an ophthalmologist (rather than an optician). Your GP can refer you to your local eye hospital to see one. A neuro-ophthalmologist would be best, if possible.

One final thing: if you have a critical health policy (some mortgage agreements have something like it in them too), then please have a look at it - MS is usually a claimable condition, but you have to claim within a certain time period.

Karen x

Tantar
16 Sep 2011 at 2:24PM
Top

Hi

Karen Dave and Jen, thank you for the warm welcome :D

Karen -Yeah I have critical care but due to having to see the dr in the past with back pain they excluded anything to do with that and chucked in Neurological conditions for good measure!!! Luckily only have 19 years left on Mortgage as only turned 30 in August and we are looking to move when youngest starts school next year but now we may look at houses with downstairs wet room and bedroom just incase or a wider stair case.
When I saw my GP and he broke me the news there was something on my scan I asked it there were any signs ot this being a possibility from previous illnesses etc and he said no, so I am a bit confused.When I first saw Specialist at start of April he said no meds if don't relapse twice within 18 months, when had second scan he said they now go by change on scan even if no relapse so wrote of to Neurologist in Southampton and he looked at my scans and again with starting on meds now to try and keep me like this for as long as possible.

Jen:- I do find resting helps, the thing with the eyes is an irratation more than anything, I find computers the most irritating and seeing as I use one all day it's a pain, tv driving and everything else I don't really notice. I do get a kind of fuzzy feeling sometimes when walking with my eyes like I might miss someone who I know because I am not focused. I am going to phone my MS Nurse and see how I get a referral to an Opthomologist, I have to have field of vision tests every year anyone and had my last one in Feb this year as I have disc drusen and puseo papilledema. I have worn glasses as am long sited since I was 4 but only need them for close up work.

I started on Avonex 4 weeks ago as was given a choice of which meds I wanted and thought why inject more than once a week when I was told they all do the same thing. I specifically asked whether there was any difference as would have injected evryday if there was proven evidence that it was the best one. My MS nurse told me it could take a while to notice any difference so will have to wait and see and the difference would build up not happen overnight. I hope they do help as really want to get back to swimming but my left hand doesn't want to play ball at the moment but only when I swim.

My huvbby, family and work colleagues are fantastic and have been so supportive. I have tried to broach the subject if I go downhill in years to come about my care with my husband and not to be scared about putting me in a home but he won't entertain it. He is always reminding me not to take on too much etc, I am very lucky :D

So lovely to have found you all as not good a huge range of people with MS to talk to. I know my MS nurse is trying to set up support group so will have to wait and see whether others are interested.

Tracey

rizzo
16 Sep 2011 at 11:46PM
Top

Just a quickie...

The standard injectable DMDs don't repair existing damage (more's the pity!). What they do is reduce the number of relapses people have, delay progression and reduce the severity of any relapses we do have. Hopefully your body will work out how to fix your hand soon.

Kx

mandy_c
17 Sep 2011 at 12:05PM
Top

Hi Tracey

I'm new here too, and just wanted to say hello. I am waiting for a confirmed diagnosis at the moment and, as someone in that position, I would say please don't ever feel guilty about your quick diagnosis. It's good for you that you can quickly access treatment and support.

Take care,
Mandy
x

» Back to New diagnosis and before diagnosis forum
‹ Previous topic: Sleeping ? Next topic: so confusing ›