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Newly diagnosed and confused

Hi! I was a little unsure about posting, but I am hoping you could give me some advise or maybe share your story. I was diagnosed on Wednesday with MS and I took it well as I expected it, I was told after my MRI Scan that I most likely had MS but that a Lumber Punture would confirm this. On Sunday night I went out a dog walk and took one of my usual staggers, I have just excepted that this is something I now do but the one on Sunday night made me angry. On Wednesday the neurologist said that going by my symptoms he expects that I have Relaps & Remission MS but the MS neurologist will tell me more about the different types of MS and which one I most likely have, but I could be waiting upto 12 weeks to meet with the MS specialists. ( I am not great at waiting) The part that made me angry was that from what the neurologist said and what I have read with Relaps & Remission MS you have periods where your symptoms are bad and then you could go for months with no symptoms. I haven’t had a period that I am 100% fine since my dizzy spells and ballance issues started in October. I had pins and needles on my feet last July but my GP put this down to walking too much. I know now that this was my first relaps then as far as I know I had nothing until October, it wasn’t until one of my dizzy spells made me have a bad fall on a road, in which I broke my nose and put my teeth through my lip. (worse of all I had to miss meeting Westlife and getting an album signed) this made me get my eyes checked and my optition sent a letter to my GP to get me sent for a MRI scan, but since this fall I am afraid to go out by myself and hold onto walls, furniture, trees, people etc when I can, or if I stagger I put my arms out so I look like I am flying. (gets me a few crazy lady looks but saves my nose meeting the pavement again) As the months went by I was slowly getting worse then in March I started being sick and was unable to go in the car or turn around in my sleep without being sick. This lasted until early May so in comparison I am better but I can’t go a day without staggering, (rant alert!) I can’t wear heels, play round and round in circles with my niece or take her up the big shoot or watch fast moving things. (films etc) I am now getting wee things like random spots, needing more sleep (usualy 10 hours a night) and tender patches on my skin and I don’t know if it is ralted to MS or not. Sorry this is so long but I am just wondering is you have any advice on how to cope until I meet with the MS nurse and how you coped? Also how to do you work round your symptoms? Thanks,

Charlene

Thanks Clare, it is lovely to know I have somone to talk to who understands, my family are trying to understand but when I mention a new symptom it is their reaction to say “I think you are blaming everything on MS, it is prob nothing” I don’t really know what to say to that. Uft sound like I was just hoping for good months. I hope your MS nurse gives you something that works for you. Feel free to PM me also.

Charlene x

Hi Charlene and welcome to the site :slight_smile: The RR of RRMS can be a bit misleading because it does tend to make things sound like it’s all or nothing with clearly defined good and bad times. The truth is that nothing in MS is so simple and just as some relapses can last a very long time, remissions can be far from perfect, with permanent residual symptoms :frowning: You’ve experienced one short relapse that went into excellent remission, it sounds like this one is a long one that may leave residual dizziness. Please note the word ‘may’ because it could still improve plus there are things you can do for it. First thing is to chase your nurse for meds. You can also speak to your GP. Stemetil can help vertigo but there are bound to be alternatives too. You should also ask for a referral to neurophysio - they can show you exercises that can help vertigo. The other thing you could consider is using a stick or pole. I think a pole might suit you best as it would be more help if you’re walking your dog off road. They also don’t look like a mobility aid so much. A pole (or stick) would mean that you don’t have to do the flying pose (I do this too!) and make it safer for. The other things you mention do sound quite MS-like, but your family is right in a way - it’s important not to assume it but to get new things checked out by your GP. For example, fatigue is the single most common symptom of MS, but you should probably get your bloods checked for any deficiencies that might be causing it. Couple of things that you might not have been told yet: you need to tell the DVLA about your diagnosis and you should check any policies you have that might have a critical health clause (eg your mortgage or insurance policies) - MS is a payable condition. I hope the vertigo/dizziness starts to improve very soon. Karen x

Hi Charlene

I am sorry you have found yourself here, but I am sure you will these people an excellent source of knowledge and support.

I am not diagnosed yet and am currently undergoing tests to see if my weird symptoms are MS.

I really hope you feel better soon

Paula xx

Hi Charlene & welcome

Once you meet your ms nurse & specialist things will start to change - gaining access to meds and other support services will be easier. It’s useful to jot down the things you want to ask them because it’s so easy to forget when you’re in there.

Sometimes after a relapse we can be left with residual symptoms, it’s also fair to say that there are lots of other things such as the temperature (hot or cold), colds, infections and even stress which can exacerbate symptoms, so over time you’ll start to notice whether anything in particular makes you feel worse.

‘How to cope’ varies a lot, everybody is different and so is their ms. Personally I just try and take each day as it comes and try not to plan too much for any one day - even when I’m having a better one - because it just catches up with me. Having said that, it’s still important to be able to live a decent and enjoyable life so there are times when I throw caution to the wind regardless of the consequences!

You might find it useful to have a look at some of the publications available on here and the ms trust website. These can be downloaded, read online or ordered to be delivered by post - the vast majority of which are free and cover a wide range of subjects. They do have some good tips so it’s worth having a gander when you feel up to it, although try not to take on too much at once cos this can have the reverse effect to being helpful!

PM me anytime & I hope you start to feel better soon

((hugs))

Debbie xx

Hi! Thanks ladies you have all put a much needed smile on my face.

Yeah Claire 0911 is my birthday, Thank you Debbie & Karen I will look into each of the things you have recommended, I am very grateful for your advice as I am unsure where to start with everything. I am a pet sitter and dog walker but will be giving this up as from next week (I am currently looking after my final dog) I am sure things will be easier to handle once I have been referred to the MS specialist, I have been told this will include a MS nurse,a neuorlogist that specialises in MS and a physio. In the meantime I need to learn some paitience lol Goodluck with your tests Paula.

Hope you are all having a good day! (well as good as it can be)

Charlene x