Hi, 1st post. Hello.
I was diagnosed with MS a month ago, following 5 weeks of acute symptoms. Treated as an inpatient for a week for a suspected stroke. Blood tests, MRI’s, lumbar puncture, evoked potential tests - you name it… I feel very very lucky to have been diagnosed so quickly, when I now understand, some folks struggle for years… but yet, I’ve had no time to adjust. No tears, no anger, just a reluctant acceptance that life has dealt me a different card. Then more happiness that I could have been dealt a really crap hand, but I haven’t been. That makes me smile.
I’m 48. I have a 4 year old & 6 year old. I have a loving husband. I know I’m so so lucky, yet I don’t know what to do. I’ve crushed my Dads world by telling him but then I feel better as I’ve not had to tell my mum (she died 19 years ago).
I’ve read so many posts on here. I’ve stayed up so late reading them. People are so supportive, encouraging, factual, pragmatic & hilarious. I hope I can join that band in time.
I ask for nothing (at the moment) but want to say hello to all you like minded souls.
I’m trying so very hard to be happy (really happy), that I’ve joined this awesome club.
A big big part of me just thinks, please someone pinch me. I’d love to think this is just a dream…
This will be the first of many posts, I’m sure.
Thank you for being there, even though I don’t know any of you. Your posts have really, really helped me at the start of this journey.
hello t2bs that was exactly how i felt. 11 years since my dx. i’m still going although very slowly. pity that your dad took it so badly but he’ll be fine when he sees you still smiling. my two sons were 19 and 20. the eldest was an apprentice electrician so when i showed him a picture of myelin damage he said “you’ll probably blow a fuse”. it is what it is. believe me, you’ll be fine (most of the time) if you want to pm me i’d be happy to chat.
Hello
You sound very sensible and pragmatic about your diagnosis. Yes, you’re right that sometimes a quick diagnosis is preferable to a long time in ‘limbo’, or of course a stroke, (or worse) but basically you’ve still got to get your head around the MS diagnosis.
Don’t expect that your current state of calm will continue. Typically people go through a lot of stages, from incredulity (how on earth is this possible?), through furious anger (why the Fog did I have to have this?), fear and worry (what will happen in the future? what about my children? my husband and other family?). I think a decent amount of negativity, fury and a possibly extensive time of vicious swearing (away from the children!) is quite useful at the beginning.
Then you have to get your head around how you are to live with the dammed disease.
You’ll presumably be assigned an MS nurse; a good nurse is worth their weight in chocolate. S/he will hopefully be invaluable in guiding you through your symptoms plus the options you have for a disease modifying drug (DMD). These are supposed to reduce the number and severity of relapses. You can get a head start by having a look at https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid At least then you’ll be familiar with the names of the various drugs and have an idea of what you’d prefer to try. The choice is all about balancing the potential benefits (average relapse reduction) against the cost (possible side effects). You won’t be given a completely free choice of drug, expect to be given a choice of several to choose from.
When you are looking for information on MS, stick to reputable sites on the internet: the About MS tab at the top of this page, or the MS Trust. Obviously, if you have questions we can help with, ask away. Just remember that we are experts at our own MS, but shouldn’t be relied upon. We’re not any more medically qualified than Dr Google!
Best of luck, I’m sure we’ll be chatting again.
Sue
1 Like
I’ve had a few more glasses of wine than usual, but I know that’s not the answer long or short term. Thank you to you both for your prompt and sensitive replies. I am numb, but very grateful I know what it is. I’m selling it as ‘an exciting condition’ to my eldest, in that we don’t when or where things will come from next. Every cloud has a silver lining. My brain fog now makes sense. I’d put it down to being a frazzled 40plus mum to two critters! I’ve worked in healthcare for over 20 years, so need to make the shift to being the patient. That’s key. I’ve met my MS nurse once. See them again in 3 weeks. Deciding which DMD to go with. I’ve read loads. More to read. So much helpful information. Not sure at the mo whether to go with a less effective one like copaxone or go with something like Ocrevus? Leaning toward the former. Not fussed about tablet, injection or infusion. Thank you so much for your words of wisdom. They are making a massive difference.
A few more glasses of wine is probably essential to mental health at the moment. (Not recommending descent into total alcoholism, just as an aid to getting your head round it!) Might I suggest a midway point could be considered re DMDs. Tecfidera has a better relapse reduction rate and is quite well tolerated by most people. Also, I used to have a link to some research that suggested Tecfidera works best when it’s the first DMD a person has tried. (Unfortunately lost the link!) Plus, I’ve just restarted on Copaxone and although when I took it years ago I had no side effects at all, the injection site reactions are terrible right now. So I’m trying to change onto the daily half dose jab rather than the 3 times per week strength. So it’s worth considering all options. Sue
I’ve not poured a glass yet!!
Thanks for the incredible helpful info re DMD’s. I didn’t know that about Tecfidera so will look it up. I’m very lucky at the mo as my symptoms are not intrusive. Brain fog, mild resting tremor in dominant hand and some head numbness. I keep switching between “hit it hard” and “softly softly.” It’s great to have choices though.
Now, where’s the wine…!
I shant say welcome, but Hello, and give your dad a hug. Go back a few days before you got your Label, FRAGILE, do not wash on high, let creases drop out naturally lol. You were just going along with the flow not quite sure why your body was misbehaving, but you were coping just fine. so go back in time like resetting a computer to factory settings. You sound like you have RRMS so you can be put on DMD there are a few. there is no rush to do anything at the moment, let your diagnosis sink in and talk to your family, communicate without scaring them half to death lol. Life will be different but it doesnt have to shift too much if you are going though this slowly. It will give everyone time to adjust especially you. Its just a label. Which comes with several warnings. The way forward for me is to look at your diet, your stress levels, and find time for YOU, to just chill and relax and yes enjoy a few glasses of wine. why not. Good luck you can do this. I find diet is helping me with fatigue, I drink koko milk fortified with B12 and vitimin D, and as presribed by my neurologist last one tablet containing 10 minutes of natural sunshine lol, which is probably more then I can cope with, which gives me natural vit D. good luck with your dad, maybe take him out for a drink. xxx
Hello, I can totally identify with you, my diagnosis was very similar to yours, this is my 2nd ever post and I’ve been on this site since my diagnosis 5 years ago, reading and absorbing trying to understand what had happened to me it’s a brilliant place to get support, sometimes it’s too difficult to talk to our families as they don’t understand what we are going through. I think it has taken this long to come to terms with my diagnosis. We all know how you are feeling, and you will go through so many emotions. You need to be kind to yourself.
I have been on Tecfidera for almost 4 years and it’s doing a great job; NEDA, no evidence of disease activity, I take it with an aspirin in the morning to stop any flushing and it works. I also take a daily vitamin D.
one bit of advice I would give is to stay away from Dr Google!
all the best x
Hi crazy chick & Steph01. Apologies for my late reply but I couldn’t log onto the forums. Thought it was some kind of initiation test I had to pass!! Finally worked out what to do to be able to login after internet searching the solution! My Dad is already a lot brighter about things, as he can see that I’m saying “it is what it is & it could have been a lot worse.” I have got RRMS. What dose of vit D do you take crazy chick? I need to check dosage with the MS nurse as she suggested giving it to our 2 kids too. I know they’d have much less! I like your analogy about laundry. I’ll remember that!! Steph01, thanks for your supportive comments. Interesting to read your Tecfidera experience. I’m leaning to that much more given the response so far on this trail, plus what I’ve now read. I don’t do Dr google! I’ve worked in healthcare for over 20 years, although not worked with people with MS, so it would be the last place I look. One of the first points I referenced after my diagnosis was what the NICE recommendations are!! It’s amazing how much I’ve learned about a condition I knew so little about. I’m so glad I found this network so quickly as I can already feel it’s worth it’s weight in gold! I feel anxious about what & when will happen next, but I’m working hard to remind myself to live each day, rather than waste precious time in a heightened state of anxiety. My husband & children have been fantastic so I’ve a lot to be very grateful & happy for.
Hi hun, i am glad your dad took it well. You sound a lot more brighter and in control of things.
I dont take vit D. My levels are normal. I do drink koko milk which is fortified with b12 and vit d, and i also get my 10 mins sunshine which is a great hit of vit d.
actually my neurologist recommended that lol.
It is best to just go with the flow. MS can change like the weather, i can have the worse night and the best day, and the best day and worse night. I never know what it will chuck at me lol.
got bladder issues ATM which are the bane of my life I am PPMS.
Just keep talking to your family and if you really feel tired tell them you just must rest and dont push it. days out can be changed. that is one thing i have found i can never organise a day out as i never know how I will feel.
xxxxxxxx
Thanks crazy chick. I’ll have a look at koko milk.
I’m a good catcher so I’ll try my best to catch whatever is going to get thrown at me!
You must be be fed up the back teeth with your bladder issues. You sound very resilient though. Goes without saying that I hope you get some relief soon. I don’t know much about PPMS as I’ve just focused on getting my head round RRMS so far. Time spent on this forum and factual websites, research papers etc are helping loads.
I’ll heed your advice. The more advice the better, as it’s going to take me a while to be an expert.
1 Like