Last reply 2 months ago
MS Woes

It all started with an eye twitch on my right side just over 2 years ago and I’d also just found out I was pregnant with bambino #1. Thought nothing of it…had them before momentarily so put it down to tiredness. Weeks pass and it developed into a constant twitch which also developed to a twitch on the right side of my mouth. I have some blood tests and Dr puts me on Vit D. This seems to help ALOT. Referred to neuro and had MRI after son is born as a precaution. Not for a second did I worry anything would be wrong, as I’ve never had any major health issues. MRI results reveal several areas of hypersensitivity/lesions. I’m diagnosed with Clinically Isolated Syndrome. What is it I wonder? Dr asks if I’ve had any other previous neuro symptoms that I can recollect, to which I say ‘no’ as it’s all a bit much to take in! After weeks at home to digest my diagnosis and scare myself with all sorts about MS, I remember that 10 years ago after freshers week I had unexplained ‘double vision’. I thought I must’ve have fallen overdone it with the 24/7 drinking and partying! Visit to the opticians and £120 lighter from the bank of M&D, I leave with some glasses and restored vision after a couple of weeks…money we’ll spent although I also no longer needed the glasses! I tell my Neuro about this episode and he suspects it was my ‘first’ relapse (at age 19). This combined with my eye twitch symptoms (which continue to this day, albeit more subtle) confirm my fears of MS. I am now 31yrs old with a 1.5yr old. I’m due a second MRI to see how the disease is progressing as I now also get mild tingling/numbness/spasms mainly on my right arm but legs as well. I fear for the future of my young family due to the UNPREDICTABILITY of MS! My husband and I would like another child but I fear if that will elicit another relapse or worse. I’m not on medication (YET) and would like to hold off as long as possible without putting myself at greater risk. My greatest fear is losing CONTROL and feeling like a burden to those I love. The happiest time of my life (pregnancy etc) has also been one of the hardest times of my life. Aside from my family, I have told only two close friends as I want to remain and feel as ‘normal’ as possible while I have that control. Whatever the future holds for us…I hope to keep positive and just take each day as it comes whilst also remembering to just do whatever makes me happy and keeps me feeling fulfilled. I’m sure like with most people on here, MS does not run in my family (that I know of) and definitely was not on my radar until I was affected. It is nice to have somewhere like this to freely express my feelings (which I sometimes suppress as a coping mechanism). Sorry for the essay! Ruth

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2 months ago

Hi @ruth87 and welcome.

Life generally is unpredictable and full of twists and turns. Having MS is really no different, but does give us the chance to focus on what is really important in our lives.

It also teaches us that we should respect our health, by living healthily and eating healthily.

We also need to acknowledge the adverse impact that stress can have on our lives. Whilst we can’t avoid stress, we can alter the way that we manage it.

Don’t allow MS to influence your family aspirations. All things are still possible. 😉

2 months ago

@ruth87, Hi – it’s good that you have found this site and can use it to offload. It can be hard to talk to others when you’re still making sense of all this for yourself, but it’s important that you do have somewhere to take all your thoughts and questions. Take good care and keep doing what makes you happy!

2 months ago

Hi Ruth you sum it up,it is so unpredictable and as stumbler says everything in life is.
We wouldn’t do anything in life if we thought “what if” and yes the knowledge of having ms makes the decisions harder but until things really affect you, don’t let it stop you.
I have often thought in hindsight that actually the only times I felt well were when I was pregnant . There is no guarantee you will relapse as each relapse is from a different lesion. You may have an exacerbation of some symptoms after birth but you need to work with your medical team who know your individual health and can guide you.
You already have a positive attitude so enjoy your life with noregrets about what you can control.

2 months ago

Thanks all for the welcome and wise words. It’s nice to think out loud sometimes…I definitely don’t plan on letting MS rule my life as such. Hope everyone’s had a good bank holiday weekend! X

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