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My first relapse

Hi

Well it’s some time since I was last here. I felt at the time like an imposter of someone who had MS. To be honest, in the back of my mind I still do. Despite having been diagnosed in 2009 with RRMS following a CIS (in the course of which, two failed lumbar punctures at Charing Cross Hospital when they lost one or both the samples on both occasions), and after a brief pre-emptive flirtation with Tecfidera 2015-16 I don’t think I have ever really come to terms with it. Yes I have felt like utter crap some days (that’s just getting older right?), and had a bit of a wobble in 2014 when things went a bit out of control for a short while but I started running. I had got fit; possibly the fittest I had ever been in my entire life. I have a wonderful family who gave me much joy (and still do). Work was good and under my control. I got all my shit back together and then some. MS? What the hell is that?.. But it’s amazing how quickly things can come crashing down around your ears.

Now the ‘wobble’ has come back with a vengeance; since, probably, last summer. Work got crap at the end of 2016 when I was asked to take yet more stuff on - the downside of being good at what you do. I have spent just over a year being stressed to the eyeballs when I had previously been carefully managing all that after the first wobble. Last summer, I collapsed at a theme park. That was the start really. The ‘feeling like crap’ days seemed more numerous and I nearly collapsed again out on a run. The fitness fell away and just didn’t seem as attractive anymore. Then worse things seemed to be happening. I think (still not sure) I was/am having the ‘hug’ on a fairly regular basis for several months. Teamed with the stress and creeping anxiety, I was convinced my heart was packing up on me. Thankfully I have been fast tracked through cardiology who have basically told me to stop being so daft. Now I am getting burning in my lower legs, paraesthesia, woolly head, affected decision making. I just feel really weird a lot of the time (well, more so than normal).

I think it’s time to acknowledge that this is perhaps my first proper relapse. But it’s so intertwined with stress and acute anxiety I don’t know what to make of it all. My annual check up with the neurologist is next month but I don’t actually know who that is anymore as I’ve been told by my GP that the previous one has moved on. The unit has never seemed particularly approachable in any case. I am the world’s worst taker of medication (bar my better half) - if I can avoid taking anything I will. I HATED the side effects of the Tec. But I’m at that point now that I feel I have to do something, take something to make me feel better. Life is all of a sudden starting to feel very bleak. I don’t get on with winter much anyway (never have done really) and it could just be winter blues but I’m a bit concerned that burying my head in the sand with this condition hasn’t done me any favours.

Anyway, unloaded. Any sensible views welcomed although I’m not at all clear what I’m looking for. “Get a bloody life” is my standard internal advice but it appears as though my left and right brain hemispheres may have stopped talking to each other and skipped the counselling sessions.

i have had highs and lows with ms.

the highs were once i had accepted the diagnosis, i determined that i would follow my heart and do things i really wanted to do.

went to portmeirion for festival number six twice.

developed a habit of buying a ticket with a free ticket for a carer for concerts, theatre etc.

started going out with my husband who is a hardened drinker and managed to keep up.

then the highs had to stop.

i had spent a fortune and done my liver no favours!

nowadays i have very little energy.

have constant pain in my legs.

have poor sleep.

you should be taking vitamin D3 4000iu -5000iu because we get nowhere near enough sun.

ask for vit D3 level to be tested when you have your bloods done next.

make sure that you don’t have a UTI because these bring on a pseudo relapse. (get your pee tested).

it is still early days for you, just 12 months since your dx.

focus on what helps you to relax.

avoid stress as much as possible.

look after your mind and work on lifting your mood.

sorry for waffling on.

carole x

HiOptimisco

You sound a little like me dx in 2010 lumber puncture Cis, my first sighn was un-coordinated right hand side of body which got better on its own, I wasn’t offered any Dmt at that time as didn’t qualify as I had to have 2 relapses within a two year period

I carried on as normal but things were complicated as unknown to me I was in peri menopause and some symptoms are very simular, brain fog memory exhaustion tingling etc etc I also found when I was in hospital the time I had my lumber puncture it was discovered I had high calcium I had a lump in my para-thyroid (tumor) I had s very stressful 6 weeks waiting for results thankfully they were bernine. I had a lump in my throat after the op for months more worry I could feel it when I swallowed it made it hard to swalllow any pills. I was 44 at the start of this. The lump in my throat turned out to be stress and menopause causes stress as your body takes on an extremely complex task and changes need to be made along the way to help it along.

you didn’t mention your age so apologies if I’m barking up the wrong pole.

The best time for me was getting a ms nurse ask your consultant when you see him or better stil ring up hospital and ask to speak to on if your fobbed off ask fo a call back and get their name. Mines a god send any worries you have just give them a call

​ask about Antidepressents to help lift your mood so you can see through these times, they really wiill make you feel a who lot better usually in a few weeks. I don’t know if you get any nerve pain anywhere but I did I kept feeling like I had a Electric shock down one finger to start with and the Antidepressents I choose were called Nortriptyline (don’t worry they are very small all are I think about the size of a letter. I didn’t have any side effects at all apart from a bit of dry mouth I take 100mgat night they do help with sleep. Little but don’t make you drowsy.

im taking Tecfidera and am much improved except for fatigue which is my main issue at the moment and of course I’m now getting hives so on course of steroids to get rid of it, I had a few stomach issues but was prescribed Lanspranol to protect my stomach but to complicate things I had stomach pains from Gallstones which at Christmas I had Gallblader removed. So now on low fat diet. Please feel free to ask anything I’d be glad to help, even if just for a chat,

take care and believe me things will better soon. Get back on that Tecfidera I’m having my first mri comparison next week I certainly feel a lot better on it than off I take my capsels after breakfast and just before bed 10pm the further apart the Dodds the least side effects you’ll get.

Ann x (smokey)