Katy, your posts are so sincere and in my view give hope. I was an emotional roller coaster after diagnosis, but this April I went on my riding holiday and hope I can continue to do so for as long as possible. Unfortunately, for other reasons other than ms, I’m going through a rough patch at the moment. But, I really think for a lot of people at diagnosis it’s a hugh emotional challenge, and people need to see there is light ahead.
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Omg i cried katy79. Yours is an insipring story that touches me. Sending love and wishing you the best for your upcoming hikes. I read ur message a lot recently… and recents events have interrupted a quite peaceful and emotionfree few weeks. We had the scan several weeks ago, and due back in next week to see someone who has looked at them. Terms are woosging past my ears. Forgot what kind of doctor it is… Basically the fear, dread and dark thoughts have returned. The wife has discovered our life insurance doesnt cover her for MS - because her mum had it. So instantly… do we sell? Move in with parents? Its keeping me up at night and making me ill just thinking about it. Next is the wife… … Katy79 says she tried to get rid of her boyfriend… bit he stook with you for love and that is what made me cry. Because the wife is doing the same to me. She knows what MS does… not just to herself, but to her fatber too. I habe mentioned before howher parents ad no love… just a carer-patient relationship. And that scares me sick. I will not leave… but when the rears flow she keeps telling me… i deserve better… i can have a second chance at life… As you can tell, we are treating this as MS because the wife is never wrong. She is a smart cookie. If she wasnt sure, shed say. She knows. Her heart knows. Her world has practically ended and im watching from the side. Again… nothing has changed or gotten worse… but she knows MS from the frontline. Im not ready. Im stuck. Im done putting on a brave face. But whatever the outcome i will be there for her. Whether dhe likes it or not. Quick question… next weeks meeting at the hospit would have been 4 weeks after the scan. If something was found, youd think theyd get us in sooner… Also, we are on holiday in menorca in a couple of weeks. Self catering and first one with the family… but im dreading it. She is too. Words on here are worth more than gold… and thoughts help! Seriously!
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I feel you have both put the cart before the horse. go and enjoy a holiday. I had issues from 2000 and was told in 2016 i had MS it took that long, but it never stopped either myself or hubby from enjoying ourselves. life is good if you want it to be.
After all the worry about myself having it, i lost my husband in October to his illness you never know when your turn is up. so stop stressing over what might be and just enjoy yourselves. I think you both have convinced yourself its MS and believe me your body can give you what you wish for.
so now go away enjoy have fun you seem to be so depressed i wonder if you should be seeing a GP about it.
Sorry oh dear i sounded a bit harsh there, but really we all end up with something, and so far the word MS has not been given to your wife, its coming from the fact her mum had it.
well my mum had heart failure and died at 93, she fell and broke her hip. My father had lupus and another weird disease, my grand father had Parkinsons and my nan had RA, and guess what god gave me MS.
Neither of my daughters have it, or any of my 5 siblings.
I really do think your depressed and to be honest reading your posts kind of made me feel it a bit down too lol.
LAUGH, enjoy, have fun, get drunk, make merry, enjoy your marriage.
like i said you never know where the shock will come from, and you are stressing yourself out.
HUGS. x
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As you can tell, no two stories are the same. No 2 ppl with MS experience the same. So even if it IS MS, lifes not over! I was diagnosed in the 90’s and at the time, the only person we knew had died within 3 years. Then another lady at my church was diagnosed. She was incontinent and in a wheelchair in two. I struggled with fatigue from the start, but did a degree as a mature student, with 2 young kids. I found out 1 year in I had MS, but I’m a stubborn bugger. I’m never going to be in the paralymics, or a marathon runner, but there ARE folks with MS that do! I’ve just got my first off road wheelchair - believe me the days of scaling hills are not yet over. But hang in htere, im sure its the not knowing thats the worse.
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Hi again
Are you absolutely certain that your life insurance doesn’t cover your wife for MS? Normally it’s not what your parents have had, but what you have that is excluded. I thought. The chance of the child of a person with MS, getting MS is nowhere near 100%. See Risk of developing MS | MS Trust MS is not a hereditary disease.
Plus, your wife does not have MS right now. She has some symptoms that are in the process of being checked out.
Right from the start of this thread, you have known that it might or might not be MS. That situation has not altered. Making big changes to your lives is so unnecessary.
With regard to the scans, I was talking to a radiologist the other day (as you do!) and it seems, an MRI will be ‘read’ by an expert, then reported to your neurologist who will take that report, your wife’s history, and physical examination into account before making a judgement. 4 weeks is probably long enough for that. Even if the MRI lit up like a Christmas tree, they wouldn’t call you in sooner, because MS isn’t a life or death thing. Obviously if there was something truly scary, they’d perhaps have acted quicker. So no news is exactly that, no news.
Try your best to enjoy your holiday, try really hard to put the spectre of MS away for a few weeks, there’s nothing you can do in the short term, except be there for each other.
Sue
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Hi there, I had just tuned 30 and just had my youngest daughter when I had a numb patch on my leg but didn’t think anything of it. Fast forward 20 years or so I was dx with SPMS.
Nine years later I have walking difficulties but not in a wheelchair and still work part time.
Now I have adapted to this way of life, I would rather I didn’t have it but you just have to get on with it.
On Saturday my youngest daughter gets married and I am just so excited about it. I am slightly worried about the walk down the aisle but I will get there. It might take me a while but with the help of the groomsman and a glass of fizz I will get there and you won’t get that smile off my face.
On her hen party I behaved as badly as the rest of them.
What I’m trying to say is she might or might not have ms but if she does there is still a lot of living to do and memories to make.
Take care of yourself.
Mags xx
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There might on here be some customers so cool that they didn’t catastrophise when it looked as though MS was on the cards; I wasn’t one of them. But things changed. I got my dx, started on a DMD. And - guess what? - life went on Work went on, my marriage went on, there continued to be bills to pay and holidays to plan and food to cook and cars to service and friends to laugh with. In other words, life with MS has, so far (19 years in) had far more in common with life without MS than I had thought it would.
Just hang on in there. Big storms can come and go and still we find we are afloat, sometimes against expectation. Most of us are more resilient than we think.
Alison
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Unexpected update… and not a good one… We recieved a letter which is essentially a copy of what the hospital has sent to the GP (I think). Scans show inflamation on brain and spine. I am certain this confirms our worries. Left work early after breaking down im front of my boss, expecting the same at home. The wife seems placcid and calm. Although i know her mind is a tsunami of worry. She has a list of 30 things to do before she’s 30… so a prompt to start on that now. Its unfair of them to send this letter, confirming something serious whilst we wait for the meeting at the hospital (which is monday next week, not this week…). I foresee restless nights, bouts of anger maybe. About the health insurance, its deffinite. Not insured for MS. Im hoping the doctors take action as this is very early… 3 months since it started… maybe the next set of smyptoms wont come as harsh or soon if she gets on the right meds/care/etc. Theres a few job openings at my work… the wife loves pharmacy work, but standing up all day? She gets stressed at the workload and hours (which have gradually increased recently). Stupid thought, but ill tell her to go for a job at mine. We have office dogs to keep the day rolling, and chairs! I hear pharmacists murder for a good chair behind the counter. Thanks for the kind words again. Your stories have enlightened me so much… i know that however dark the road ahead is, ill always have you guys and this forum. It means a lot. BB
make sure you both have the most fabulous holiday possible.
you both deserve it and need it.
Hi BB
To be absolutely certain, the inflammation on the brain and spine should say ‘demyelinating lesions’. If it’s inflammation but not demyelinating, then it may not be MS.
The trouble with getting copy letters without any explanation is that you simply don’t have sufficient knowledge to interpret what the letters say. But it’s better than being left out of communications that are written about oneself.
But supposing it is MS, Mrs BB could have years and years of very few symptoms. I had MS for 15 years before I really lost mobility. And I’ve been very unlucky in that I’ve been unable to take disease modifying drugs, despite having relapsing remitting MS.
So, go off on holiday, have some fun and enjoyment together. Try not to overstress on the MS problem.
And when you come back, having had your hospital appointment, let us know what happens. You’re quite right, we’re going nowhere.
Sue
Sorry for jumping on this thread but I just wondered if you would mind sharing what it was symptom wise that got your GP to investigate MS. Ive had numb tingly finfertips last winter, urge to wee, stranfe sensation in hands and feet wheb in bath or shower (again only during the winter) and early 2018 a severe episode of dizziness while walking my dog where the world span and I couldn’t walk in a straight line, GP said that was labyrinthitis. Im so very paranoid that these are signs of MS. My urge to wee has got worse and I’ve started to feel weakness in arms and legs. Im an anxious person especially about health which doesnt help and i always google symptoms which is what lead me to thinking i have MS Hope you don’t mind me asking Best wishes Anna
Hello. We have just returned from the hospital. Inflammation on the spine is small but obvious, and most likely the cause of the wife’s numbness. The inflammation on the brain was described as “subtle”… and very very small and hardly visible. If it wasnt for a neuro doctor who further scrutinised the scans, they probably wouldnt have found them… But overall they did fond something. Not enough the call it MS… and certainly not enough to put my wife on steroids or other drugs. Not planning a lumbar but they did take a trio of blood samples (for vitD… somethong else… and to also check antibodies etc). The wife is again quite placcid. If anything, she’s happy she has a name for it now… but the doctor called it Clinically Isolated Syndrome. From what i read, its one of the fast track routes to MS and no turning back. What will a scan in 12 months show? Whats next for symptoms? What can i do? Im stuck in a spiral again but i think the wife is admitting defeat… no point getting emotional… Can someone can help me with what to do with CIS? Thank you BB
BB
You’re on the verge of panicking again.
Have a look at Clinically isolated syndrome (CIS) | MS Trust
CIS can convert to MS, but it doesn’t always. If the doctors thought that Mrs Bear was going to quickly relapse again, and therefore have MS, then they’d perhaps have suggested a) a lumbar puncture, and b) some low level DMDs. They didn’t, so it seems likely that she will recover over the next months, and maybe never have another episode.
Take a leaf from your wife’s book. It sounds as though you’re doing all the worrying and fretting so she doesn’t have to. If she is relaxed about it, maybe that’s what you should be aiming at too.
You may find that in years to come you’ll look back on this period and wonder why you spent so much time worrying.
This would be the case whether she is ultimately diagnosed with MS in months or years to come, or whether this remains an isolated occurrence.
At the present moment in time, Mrs B does not have MS. No major changes to your lives are necessary. Try to relax about it.
Sue
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Sue, I come on this forum fairly regularly, primarily to read other people’s experiences and like many others I am going through the process of tests and appointments and what ifs etc etc etc. I would just like to say that reading your replies to people and the words you offer actually enables me to sleep easier some nights. From an anonymous stranger…thank you’
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The replies on this thread are so helpful. Big Bear, can I send in my 2 cents worth? Life throws us curveballs. I can appreciate your worries for now and the future. I had neurological symptoms a year ago, and an MRI came back clean, but the neurologist was clear in saying he just did not know- its not MS now (his original and immediate suspicion when a 30yr female with sudden onset neuro symptoms walked in), but he freely admitted- this thing, It might return, or It might not. It may turn out later to be MS or It might not. I can tell you, as a single mum with 3 young obes, I was devastated. How can I take the kids to school if I cant drive? How can I (insert a million more worries here). But as someone else said, life doesn’t stop. I plodded along, and gradully my walking got better, my verbal fluency returned, I returned to work. I panic less now, a year later, but I still have days where I am… Well, no, not terrified but certainly in that ballpark. Wondering if there’s a ticking clock counting the last of my “normal” days. Your mental health is very important. You have been thrown a huge curveball, and I think the fact that it has the potential to change so much has left you little resolution. I really urge you to support your mental health. Some practical ways are talking to someone, your wife but also someone not in this, and making sure you are exercising and eating right. Try to be conscious about getting enough sleep, and you can try music, meditation or other activity to redirect your thoughts.Dont give up on the things you enjoy. Your gp is also another support, even if it’s just to debrief and talk to. Your wife’s mental healh is also important. I think we put a bit of a stigma on mental health, but I want to encourage you to get the support you need to get through this difficult and extremely stressful time.(And your wife with everything I said as well). Look after yourself, BigBear.I appreciate how frightening this time is for you in many ways. I find it helpful to step back and evaluate what I need for self care (“ok, Ive noticed Ive said the words IM FINE a lot this week, which means Im not fine. I need good nutrition for my body, which might have to come as frozen dinners if Im not up to cooking and Im going to the movies on my own for some downtime”).Maybe this helps, and if not, ignore it all!! Find what’s right for you. Hope this helps, Riv xxx
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That is a brilliant post. Well done for getting through your worrying year.
I really hope you continue doing well and that your scary symptoms don’t return, and obviously that you don’t turn out to have MS in the future.
Look after yourself too!
Sue