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Newbie diagnosed with MS today

Hi,

I just wanted to share my experiences up until this point today…

I am female, 36 years old and started experiencing symptoms 3 years ago. I started training for a 10 mile running race, first on spin bikes and at the gym. My first symptom was right leg weakness when trying to cycle, my foot kept falling out the footstraps and I lost ability to pick it up, I wasn’t overly worried as I could strap my feet in tighter to resolve the problem.

As time went on I noticed my quad muscles on my left leg were bigger than those on the right. I was told by a personal trainer that it was normal to have some muscles bigger than their matching ones. Again I put it down to natural muscle variation.

Then I joined a running club, this was when I got scared. I was one of the faster runners in the group, but I’d do one lap of the track and my right leg would drag, my foot turn in and I would have to pull off before I fell over. I thought trapped nerve so immediately went to see an osteopath, she told me the problem was between my shoulders and advised seeing a GP.

I went to the GP, explained my symptoms and was sent to see firstly a physiotherapist after several appointments they suspected ‘compartment syndrome’ so I then had an emergency appointment to have a doppler scan done on the veins in my legs. After a chat with the consultant who did the doppler scan, he referred me to the neurologist, that was 2 and a half years ago.

The neurologist examined me and diagnosed mild spasticity and dystonia of the right leg. He then sent me to have an MRI, various blood tests, lumbar puncture and Visual Evoked Response test. The intial MRI was a little blurred but he showed me where I had a lesion on the spinal cord in the T part of the spine. The lumbar puncture CSF came back positive. VER normal and blood tests all fine except low on B12.

I was offered 1000mg of steroids per day for three days to try and hasten the repair of the lesion. The following 6/7 weeks was my clumsiest period to date, I cannot count how many times I fell over, spraining both my wrists. My symptoms have never full subsided, the steroids did little if anything to improve my experiences. It did completely clear up my psoriasis though, I had not seen normal skin on my kneecaps since I was about 17!

Then it was just a waiting game, MS had been mentioned very casually at this point during appointments, but it felt like I had been tested for everything, answers were not difinitive. Limbo.

Over the time since my first symptoms showed, I have various spasms, inexplicable muscle pains in my leg and back. Causing various degree of discomfort day by day. I have realised over time I cannot have hot baths, work in the sun too long or exert myself too much, the heat brings on motability issues and fatigue.

February 2015 I was typing on the computer and my right arm began having weird tingling and numb sensations. I had a panic attack as this developed into not being able to flex my fingers. In my panic I had a cold shower as I thought I must be too hot (even though I was not). I went back to the neurologist who quickly ordered an MRI scan for me.

My second MRI scan was clear and showed a second site of a lesion or plaque. From this point on I kind of knew what my diagnosis would likely be MS. Today I finally got that diagnosis, I feel relieved, I can associate the odd pains, twitches etc that I have been experiencing to something.

I am also scared of what the future holds, everything in my life is just slotting nicely into place (even though sport and fitness no longer factors in my life, my first real shattering lifestyle change) Now my partner and I have the very real prospect that my MS has to be factored into everything.

I had been making jokes (my coping mechanism) about what kind of wheelchair I will aspire to in a decade if I get diagnosed, all of a sudden its very real.

I am being monitored for the next five years, during that time I will get the diagnosis of what form of MS it is I am dealing with.

Anybody have any advice on how to tell your elderly parents without them keeling over with worry?

Hello squirrel, How are yer ? Love the zombie part… Anyway, no clue how to tell your parents! Straight, I guess. Give them the facts, play it down. … mum was at my diagnosis, watched me turn green at the brain pics. (I was 25, just graduated from uni) Life goes on, just with different degrees of frustration. I stopped playing football when I’d make stupid mistakes in goal. Turns out it was ms coordination related. Hope it all goes ok. Welcome to the group. Seem all positive. Good for down days. Take care of yourself, Andy

Cheers for the welcome and advice Andy. I am currently studying the second year of a degree and I have no intention of stopping my lifes progression, learning and experiencing new things, I’ll just make the changes as, when and if they are necessary. I am actually feeling really good and positive, I think because of the relief of finally knowing and not being in limbo. I have to something definitive to work with. Today I am starting to record symptoms in a diary to help the neurologist diagnose which MS type I have.

It all seems a bit surreal at the moment, but I like to think the cup is half full rather than half empty. I am sure I’m going to have some down time and need support, but at the moment its all good (even the torn muscle pain I have in the back of my leg today can’t get me down) :).

I tried to tell my parents yesterday, it didn’t quite work (I bottled it). They think MS is a death sentence, even though I explained its not at all. They are very old fashioned and…old! I will try again tomorrow…straight!

How long have you had MS Andy and what type?

Zombiesquirrel

a.k.a Nikki

I’m glad you’re feeling so positive Nikki, that’s a really good place to start. It is ok to have down days too, and whatever kind of day you are having you have to take care of yourself.

I was diagnosed with RRMS earlier this year; I’m a couple of years older than you but it was a big shock to me, and completely unexpected. I was dreading telling my mum as we’ve had a serious run of ill health (and death :frowning: ) in our family and I felt so guilty at giving her more unpleasant news. It was hard, but tbh there was no way I could not have told her. I guess all you can do is reassure your parents that you still feel the same, that you aren’t immediately ill and that they don’t need to worry right now. Hope it goes ok.

Hi and Welcome,

First of all my advise would be that you still exercise as much as possible. It has been proven that exercise reduces fatigue in people with MS. I find that yoga classes are great for stretching spastic muscles and in general also maintaining muscle strength.

I am still in limbo although my onset is similar to yours. However there is only one lesion and my CSF was negative. I first noticed foot problems in 2009. In 2011 they also thought compartment syndrome but then an MRI revealed the lesion in the “C” area of my cord. I had steriods too which did nothing.

Hope you find answers soon.

Moyna x

Thanks fuzzball. Wow, I can remember the first time I was told its likely to be MS, I think I processed it emotionally then. My parents I will speak to tomorrow. Lots of reassuring them, like you say, its guilt that is stopping me really. Grab the bull by the horns :slight_smile:

Hi Moyna, I want to keep doing exercise, I cycle regularly, walk my dog daily and have a physically demanding job (the MS has only a small impact at present). It feels so weird associating MS with me at the moment, something I’ll get used to with time.

Limbo is a really hard place to be, I completely sympathise with how frustrating it is. Hope you get some answers soon!

I am thinking tai chi and/or yoga will suit me.

:slight_smile:

Joking about it is (and was) my coping mechanism too. The neurologist who dx-ed me 16 years ago, and who knew my preferred style for dealing with these things, advised me ‘not to go home and widen the doors just yet’. He was right (I still haven’t) and I offer you the same advice in the same spirit.

No, I’m afraid not. If there is a good way round this, I never found it. The trouble is, one is delivering the news when probably feeling so fragile and bruised oneself. I don’t think there is a right way, really. It is very tough on everyone.

Good luck. I am sorry that you have joined the club.

Alison

Hello Nikki,

How are yer?

I was diagnosed 19 years ago this friday. Yay !!! What type, no idea. Shocking I know, but I can’t remember what they said. After nearly flaking out at the pics, I declined to look at MRI part 2. One in '95, the second last year. My youngest son had a paddy at my (aftercare) meeting with the MS nurse, so it was cut short. I think she was concerned he was going nuts, and I was concerned he would finally break the window with his Cyberman ! But what I did get was there wasn’t much deterioration in the second decade…so fingers crossed.

A lot of people think ms is a death sentence. I think it depends on their experiences. People see the wheelchairs, but not people like me. When I staggered, they saw drunk person, same when my words slur. The spectrum is so vast.

I’m one of the lucky ones I guess.

Take care of yourself,

Andy

LOL… thanks for welcoming me to the fold Alison!

The jokes have subsided a little whilst reality kicks in, though, with your advice in mind, I’ll put off choosing the quality of tyres for my possible future ride until that bridge, if ever, needs crossing :slight_smile:

On a serious note, I must be strong and tell my parents and family, they have a right to know.

Thanks all x

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Cheers Andy, 19 years and you’ve not got wheels! Your story is reassuring too. People who know me have noticed I have an intermittent limp and that I have to lift my legs to get in the car or cross my legs now. Some days its worse than others.

Hey Nikki, How are yer ? 19 years, no wheels, no cane. Considered it a while back when I was having an episode, and people were coming at me like the Walking Dead… suddenly the gaps looked smaller, and they wouldn’t move out of the way… But nothing yet… Glad I can be of help… Take care, Andy

Dear Ms Zombiesquirrel.

You seem to have everything you need, to make the most of this horrible situation. From reading your words, i have the utmost confidence that you will continue to lead the life you desire, to the absolute best of your ability.

Your diagnosis, whilst coming without surprise and perhaps even with a degree of relief, is still a kick in the guts. But it is one you are already coming to terms with. This is a credit to you, illustrates the depth to your character and holds you in excellent stead for the challenges which await.

I have not told anyone in my family (apart from those with whom i live) of my MS burden, as it would help neither me nor them. In fact, they might look at me in a different way which in turn would likely not make me feel any better. Their ignorance is my bliss. Of course, if things become too difficult to hide, i will fess up.

You have chosen the path of full disclosure and if that is what works for you, then good for you! I think however, that you are more than deserving of pleasing yourself. As said, new challenges and periods of adjustment are upon you. But you have time on your side. This is a marathon more than a sprint :slight_smile: If managing the reactions of family and friends to your news will mean more work for you, you might want to take a more relaxed schedule.

In any event, i wish you the very best of luck. Welcome to these forums, they are very useful. And one piece of advice / opinion i would offer to you right at this time (for what it is worth): get on a DMD. ‘Limbo’ is a name to suggest that doing nothing is actually something. This is bull5hit.

It does not matter what form of MS you have, as no DMD will make your situation worse. Find a neurologist who will be happy to categorise you as RRMS and get on a DMD. If with time your brand of MS is found to be ‘progressive’ then the DMDs will have to end. But if your’s is relapsing - remitting, then sooner the better! (If i am wrong in any of this, please someone correct me.)

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Hi, thanks for the support. What is DMD? What is DX? I know what an LP is, wouldn’t wish it on anyone :stuck_out_tongue:

DMD is disease modifying drug.

DX is diagnosis.

An expanding vocabulary is all part of the adjustment :smiley:

i forgot to mention, there is an ‘abbreviations sticky’ thread, at the very top of the ‘everyday living’ forum.

I am an open book, disclosure of my condition to family and friends is important to me, I’d rather give them opportunity to ask questions and understand. Not seeking sympathy from them, just honesty, no secrets, no surprises, I think honesty is better in the long run, any awkwardness is nipped in the bud. Openness has always worked best for me. :slight_smile:

Cool, thank you :slight_smile:

I’ve gone for openness too, with family and friends - because I may need their help! It’s been fine, and has even gained me Krispy Kreme doughnuts (a gift from a friend).

HI Nikki

I too am recently diagnosed ( last Friday ) . I,m 44 , work ( more than ) full time in a stressful job and am single mum to 2 kids ( 20 & 22 , so really adults but still dependant on mum lol ) …for a long time I put symptoms down to work , running home , having busy social life ,visiting 95 year old grandad in his care home ever day, menopause and generally juggling all the balls in air e.t.c… was joking about my clumsiness and wobbly walking, falling asleep.when having romantic meal at my boyfriends , and having taken to possessing a very large array of tenna lady … , yet deep down knowing this Isn,t normal …so initial reaction Friday was euphoria at having confirmation I am not going nuts …in middle of nasty relapse at moment which also is confirmation I guess …since then have tried to keep my cup half full approach to life ( known as little miss positive to my friends ) , but at times have found it hard to deal with the range of emotions whilst trying to keep upbeat to family ( going through the grief cycle I guess ) . This site has been fab and yesterday took the plunge and did my very first post on a forum

Anyway enough about me …how are you today . Have you managed to tell parents yet ? I too was worried and thought it may help you to know my experience ( had range of reactions )

Mum and dad …had been drip feeding them possibility since just before my first appointment with Neuro . My Aunt has had MS for 30 years and has been in wheels since DX…very different back then and hers is an extreme form as had no symptoms prior to this first episode …but knew this would be parents point of reference so had started talking in general about advances in treatments , different types of MS to prepare them…

DX day .Mum rushed over , hugged me and cried but then went into mum mode , changed my bed , run me a bath and headed off to m and s to stock up on goodies to tempt my appetite …unfortunately didn,t have her glasses on and returned with little pasta meals …for babies 0-18 months lol…but has been fantastic and positive ever since

Dad less emotional , but hugged me extra tight on father’s day …wonder if he would have been so huggy if he knew my bladder spontaneously emptied ( no warning ) whilst i was sat in his chair …thankfully it is leather chair and rest of family had taken my niece for a walk and so only mum witnessed my shame and we managed to laugh about it …and made out to others when they came back that I had changed as split my coffee down me…Dad in full practical mode and has tackled the jungle that was my garden and is coming back today to fix leaky shed …but when he thinks I am not looking can see him looking at me with worried / sad face bless him .

I won’t bore u with finer details of how others have taken news … kids know and am proud of how they are coping …(son has even tidied. His pit of a bedroom and learnt how to turn washing machine on…every cloud eh ) …2 close friends also have been fab …mix of support for DX…but also keeping me in " real world " with all the gossip and giggles …even illness / hospital phobic boyfriend has also been surprisingly supportive since DX. Likewise bro and sister in law have been great .

I am pleased that the people close to me know and have found it has helped to be honest…whilst still worried they are upset it helps that we can talk , laugh and if needed cry about it together ( thankfully not much of that ) …with regards to telling others I will do that as when and if time feels right but I don,t feel need to share my MS label just yet …

Sorry I,'ve waffle a bit about me , but have found since stalking this site other people’s experiences helpful …am on steriods for current flare up and feeling brighter today …hope you are too and your parents take / took the news OK ?

The cup of life is always half full (always worse things it could have been ) and at least you know what u r tackling now …but equally be kind to yourself when a low day hits …it’s massive shock ( even if half expected )

Hope u have a good day x

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