Hello everyone. I posted a thread a few months back saying my GP suspected I had MS. Well, I went for 3 x MRI scans (head, neck & upper back) A visual evoked potential test And today, a lumbar puncture. My work are not backing down, holding the discipline against me & witheld occupational sick pay. I had to sign off work before my tests due to work related stress because of this & stress from my symptoms/the tests were upcoming. Anyway… As the post suggests I’ve been diagnosed with MS today from the MRI results alone. My history of symptoms linked up to the lesions on my brain & spine. I’m 25. He says they will just check out results of lumbar puncture as it is a very very rare chance it could be a different rare disease but the consultant neurologist is pretty confident it will show MS, but even if it comes back normal, I am still diagnosed with MS. So I am getting appointment with MS nurse in 2 weeks, and meeting consultant in a month where we will go over all the results in detail and he will show me the lesions on my MRIs. Anyway… It’s pretty exciting that a new oral drug is coming out in a month or so!!! I say exciting as I am glad I have been DX quickly as out of limbo land and I been suffering worst symptoms for 6 months so another month to wait for the oral medicine is nothing really 
I’m really just writing to speak to people who do understand. People without MS try to, but they can’t have any empathy as they have no idea what it’s like. What treatments is everyone on currently if you care to comment? How have you found them and will you be trying the new oral one? God bless, Jacelyn x
Also my eyes are blurry, did anyone get that after lumbar puncture?
HI JACELYN,
FIRST AND FOREMOST, I’D LIKE TO SAY THAT I’M SO SORRY TO HEAR ABOUT YOUR DIAGNOSIS. YOUR WORK SITUATION SOUNDS FAR FROM IDEAL AND, FROM PERSONAL EXPERIENCE, I CAN UNDERSTAND HOW MUCH EXTRA PRESSURE THAT CAN PUT ON YOU, ESPECIALLY WHEN YOU’RE DEALING WITH THE UNCERTAINTY.
OBVIOUSLY EVERYONE DEALS WITH THEIR DIAGNOSIS DIFFERENTLY. PERSONALLY, I WAS RELIEVED TO FINALLY KNOW WHAT WAS WRONG WITH ME. I WAS IN LIMBO LAND FOR ALMOST 10 MONTHS WHICH WAS A NIGHTMARE. I WAS UNABLE TO KEEP MY JOB, AM UNABLE TO DRIVE AND HAVE SEEN MY INDEPENDANCE RESTRICTED.
IF IT IS ANY HELP, I WAS DIAGNOSED IN OCTOBER 2013 ALSO AGED 25 SO I DO UNDERSTAND HOW YOU MIGHT BE FEELING. IT’S TRUE WHAT YOU SAY ABOUT PEOPLE WHO DON’T HAVE MS NOT BEING ABLE TO UNDERSTAND WHAT IT IS LIKE. I TOO HAVE FOUND THIS SITE TO BE A GREAT SOURCE OF INFORMATION AND SUPPORT.
I’M CURRENTLY TAKING ORAL METHYLPREDNISOLONE TO CONTROL MY RELAPSES. I’M WAITING TO SPEAK TO MY NEUROLOGIST TO SEE IF I’LL BE HAVING THE NEW DRUG.
I REALLY HOPE THAT THIS HELPS.
TAKE CARE OF YOURSELF.
SARA.
Thanks Sara, it’s good to know you been where I am now. Yesterday when I was diagnosed I was a bit in shock - not really seeming worried and not upset as I did expect it - but today it has sunk in and I am feeling quite upset. I guess it’s just the shock of actually hearing that I am diagnosed with MS. And my lumbar puncture was really quite traumatic for me yesterday (doctor couldn’t find the right bit for 20 min and another doc had to come in and take over!) …But like you in a way I feel relief, but at the same time I just hope whatever drug I go for, that it will improve my symptoms… Really don’t want to be stuck like this (can’t walk far/stand for too long… So currently no exercise, no clothes shopping, dread walking anywhere or if I do go out I always need to know there’s toilet close due to bladder problems)… But my mum says when I get to speak to the MS nurse, I’ll get really reassured & we can start dealing with the individual symptoms. How did you feel when you were diagnosed? Did you find the MS nurse really helpful? Jacelyn
Hi jacelyn I got diagnosed in November so fairly recently I Ike you can’t walk far can’t walk my dog thanks god for online deliveries it’s a nightmare I have 2 young kids. I’m on my 4 relapse since June. Are you finding your stiff at all. I’m on extavia just started end of dec. still trying to get this relapse under control. My doc thought it was ppms but neuro it’s sure it rrms as my sight recovered as did my facial muscles dropping and although my walkings not great the foot drop helped. But all my muscles core bum are all weak. Started in a rehab clinic just day visits an hour away. But physio gave me excercises but I’m really struggling with them. So going to try and get into physio here locally. I have a 4 year and old and 9 month baby so I’m exhausted. I never get out with friends and I hate I can’t wear heels (vain) I know. But I keep getting reassured that things will settle when I get the right meds. This ms stuff is a lot to tAke in. Take care x
HI JACELYN.
I CAN TOTALLY RELATE TO WHAT YOU’RE SAYING. LIKE YOURSELF, I EXPECTED THE DIAGNOSIS AND WHEN I GOT IT, I WAS MIGHTILY RELIEVED BECAUSE THE DOCTORS HAD PREVIOUSLY BEEN CHECKING FOR TUMOURS SO WHEN I GOT MY DIAGNOSIS I WAS STILL BREATHING SIGHS OF RELIEF THAT IT WASN’T A BRAIN TUMOUR. FOR A FEW DAYS AFTER MY DIAGNOSIS, I WAS FINE BUT THEN ABOUT 5 DAYS LATER, ALL OF A SUDDEN AND WITH NO WARNING, I JUST BROKE DOWN AND CRIED LIKE A BABY FOR ABOUT 4 HOURS. THERE WAS SO MUCH THAT I WANTED TO DO THAT I THOUGHT MS WOULD STOP ME DOING. I TOLD MY HUSBAND THAT I WOULDN’T FORCE HIM TO STAY WITH ME AND WOULD UNDERSTAND IF HE WANTED TO WALK AWAY AND I BASICALLY SHUT MYSELF AWAY FROM THE WORLD FOR A FEW DAYS. I JUST COULDN’T FACE SEEING ANYONE OR SPEAKING TO ANYONE.
LIKE YOURSELF, I FOUND IT HARD TO DO CERTAIN THINGS TO START WITH BUT, ONCE I STARTED SOME MEDICATION, THINGS DID IMPROVE SLIGHTLY.
MY MS NURSE IS ABSOLUTELY AMAZING. I’D BE LOST WITHOUT HER AND I’M SURE ONCE YOU MEET YOUR NURSE AND START WORKING OUT WHAT MEDICATION WILL WORK FOR YOU, THINGS WILL BECOME BETTER. I FOUND THE SITUATION MUCH EASIER ONCE THEY STARTED DEALING WITH INDIVIDUAL SYMPTOMS.
I KNOW THAT RIGHT NOW, EVERYTHING SEEMS A BIT BLEAK BUT I PROMISE YOU THAT THINGS WILL IMPROVE. THE WAY TO LOOK AT MS IS THAT IT IS A MARATHON RATHER THAN A SPRINT. YOU’LL HAVE GOOD DAYS AND BAD DAYS AND MY ADVICE TO YOU IS TO FOCUS ON THE GOOD DAYS. CONCENTRATE ON WHAT YOU CAN DO RATHER THAN ON WHAT YOU CAN’T. OK, AT THE MOMENT YOU SAY YOU CAN’T GO CLOTHES SHOPPING. MAYBE FOCUS ON GOING FOR A MAMMOUTH SHOPPING SPREE ONCE THINGS HAVE CALMED DOWN OR MAYBE DO SOME SHOPPING ONLINE. THAT WAY YOU GET THE BEST DEALS AND DON’T HAVE TO FIGHT YOUR WAY THROUGH CROWDS OF PEOPLE.
REGARDING THE EXERCISE, WHEN YOU SPEAK TO THE MS NURSE, HE OR SHE WILL BE ABLE TO ADVISE YOU ON THE BEST KIND OF EXERCISES TO DO TO GENTLY GET YOUR BODY USED TO EXERCISING AGAIN.
TRY AND KEEP POSITIVE CHICK.
SARA XX
HI JACELYN.
I CAN TOTALLY RELATE TO WHAT YOU’RE SAYING. LIKE YOURSELF, I EXPECTED THE DIAGNOSIS AND WHEN I GOT IT, I WAS MIGHTILY RELIEVED BECAUSE THE DOCTORS HAD PREVIOUSLY BEEN CHECKING FOR TUMOURS SO WHEN I GOT MY DIAGNOSIS I WAS STILL BREATHING SIGHS OF RELIEF THAT IT WASN’T A BRAIN TUMOUR. FOR A FEW DAYS AFTER MY DIAGNOSIS, I WAS FINE BUT THEN ABOUT 5 DAYS LATER, ALL OF A SUDDEN AND WITH NO WARNING, I JUST BROKE DOWN AND CRIED LIKE A BABY FOR ABOUT 4 HOURS. THERE WAS SO MUCH THAT I WANTED TO DO THAT I THOUGHT MS WOULD STOP ME DOING. I TOLD MY HUSBAND THAT I WOULDN’T FORCE HIM TO STAY WITH ME AND WOULD UNDERSTAND IF HE WANTED TO WALK AWAY AND I BASICALLY SHUT MYSELF AWAY FROM THE WORLD FOR A FEW DAYS. I JUST COULDN’T FACE SEEING ANYONE OR SPEAKING TO ANYONE.
LIKE YOURSELF, I FOUND IT HARD TO DO CERTAIN THINGS TO START WITH BUT, ONCE I STARTED SOME MEDICATION, THINGS DID IMPROVE SLIGHTLY.
MY MS NURSE IS ABSOLUTELY AMAZING. I’D BE LOST WITHOUT HER AND I’M SURE ONCE YOU MEET YOUR NURSE AND START WORKING OUT WHAT MEDICATION WILL WORK FOR YOU, THINGS WILL BECOME BETTER. I FOUND THE SITUATION MUCH EASIER ONCE THEY STARTED DEALING WITH INDIVIDUAL SYMPTOMS.
I KNOW THAT RIGHT NOW, EVERYTHING SEEMS A BIT BLEAK BUT I PROMISE YOU THAT THINGS WILL IMPROVE. THE WAY TO LOOK AT MS IS THAT IT IS A MARATHON RATHER THAN A SPRINT. YOU’LL HAVE GOOD DAYS AND BAD DAYS AND MY ADVICE TO YOU IS TO FOCUS ON THE GOOD DAYS. CONCENTRATE ON WHAT YOU CAN DO RATHER THAN ON WHAT YOU CAN’T. OK, AT THE MOMENT YOU SAY YOU CAN’T GO CLOTHES SHOPPING. MAYBE FOCUS ON GOING FOR A MAMMOUTH SHOPPING SPREE ONCE THINGS HAVE CALMED DOWN OR MAYBE DO SOME SHOPPING ONLINE. THAT WAY YOU GET THE BEST DEALS AND DON’T HAVE TO FIGHT YOUR WAY THROUGH CROWDS OF PEOPLE.
REGARDING THE EXERCISE, WHEN YOU SPEAK TO THE MS NURSE, HE OR SHE WILL BE ABLE TO ADVISE YOU ON THE BEST KIND OF EXERCISES TO DO TO GENTLY GET YOUR BODY USED TO EXERCISING AGAIN.
TRY AND KEEP POSITIVE CHICK.
SARA XX
Hello thanks for your replies. Em - wow you have 2 kids, I don’t have any yet but that was one thing I kept thinking about how might it affect me when I have mine! at the moment I am sort of like an OAP walking (need a clear path, once my dad suggested kicking things out of my way, but when I tried that I almost lost my balance lol…). I am stuff when I have been sitting and go to stand up. Sometimes it takes a few attempts to stand up but not overly difficult. If I kneel down the problem is getting up, always need to grab a shelf or a hand to get up. Hold onto bannister moving on stairs. Cannot close eyes in shower or loose balance. Legs like heavy logs. NO HIGH HEELS. Can only walk for 5-10min and then legs go worse and worse before I need to sit down or can hardly walk/foot start dropping/bladder seems to go hand in hand with when I’m walking too. Can’t run at all. So if I got somewhere to walk & need the lol suddenly, it can be a panick when I can’t run!!! And of course the dreaded fatigue, I’m so glad I can talk to ppl who finally understand the frustration of what I’m talking about!!! My friends & family good but sum aquiaintances just don’t have a clue… And say insensitive stuff… My old work colleague “fancy coming to the shop 10 min walk away?” Me:“I can’t…” Her:“oh you can’t be bothered that’s alright I’ll go myself!” And she knew of my symptoms!!! But I think sum ppl don’t believe/just can’t understand. Sara - I know what you mean about heels!!! Really really really!!! I think at first I started not wearing them coz they were “sore” then I just couldn’t walk one step in them without looking like I was on a type rope!!! X
Ps thanks for your encouraging comments they mean a lot and I am just looking forward to seeing results of correct medication and when I can climb mountains again… Literally… I will again! X
Sorry I got confused about who was talking about heels cause I am always on my iPhone it’s hard to see the messages I’m replying to! Doh!!