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Im struggling, and this is so early signs you might laugh.

Hello. I want to start by saying this may be nothing… but my brain cannot switch off and id appreciate whatever help this lovely forum can share. My fantastic wife, not even 30 yet, has complained of leg numbness for a week. Her left leg worse than the right. She was admitted by her GP to A&E for a check at the start of the week, and the doctor there (however thorough and complete his examination was) ended with him saying “nothing to suggest it’s neurological. Reactions good. Vision good. Balance good. Its probably a weight issue”. Blood tests came back with nothing. Bear in mind, she stands up all day in her job and she previously had ankle problems, so my mind was initially balanced. Stress after recent family bereavements also might contribute, i thought… …but as this week progressed, i started feeling lost, bewildered, depressed (first time in my life!), and very scared…but that’s my nature. But i keep thinking… My wife’s mother had MS. My wife watched her mum with the condition up until she died. Her father was her carer, and he’s one of the true great men in my life for his sacrifice and committment. But will that be me? Last night she came back from her dads… complaining her left side (just above her pelvis) is tingly. She had blood tests at her GP yesterday (since we agreed this cannot just be a weight problem). We are awaiting these. I sit here lonely and scared. What if? I know its a waiting game… but if we are potentially just around the corner from something we cannot control or avoid then forgive me for my rambling. I have a dream job and my second love is hiking and adventure… i might have to wave goodbye to all that and be like the man i respect. I think my wife knows its MS… and would she live with it after watching her mum crumble away? Any help you can give will help me during the darkest time in my life. Im afraid to ask anyone i know.

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hi bigbear

you will just have to wait.

you say that your wife knows it’s ms but she needs to request a referral to neurology, if only to put her mind at rest.

don’t you think you may be over thinking this one?

if she DOES have ms, you will be amazed at how strong us with ms can be.

perhaps you should see the gp and tell him how bad you are feeling.

there are meds for anxiety which could help.

sorry that this is probably not the reply you wanted but no way am i going to further your doom and gloom!

pull yourself together and give your wife the support she needs.

nobody is saying that you can’t dream of adventure.

it may be a good idea to have adventure now with your wife.

spur of the moment last minute booking of a holiday, which doesn’t have to be all about beaches but can be about adventure.

give her a big bear hug as soon as you see her.

stay calm and stress free because stress is no good for anybody.

carole x

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Hello

You and your wife are jumping to conclusions that are not necessarily true. The chances of the child of a person with MS also getting it are slightly higher than in the average population, but not much more. Have a look at https://www.mstrust.org.uk/a-z/risk-developing-ms

And it sounds like the doctor your wife saw at the hospital did a fairly thorough examination and decided not to call in a neurologist for an opinion. So in all likelihood it’s not MS.

But supposing it is. The chances are that it would be the relapsing remitting variety rather than progressive (85% of people diagnosed with MS have RR). And the times have changed drastically in the last 20 or so years for people with RRMS. There are now 12 different disease modifying drugs (DMDs) available for people with RRMS. This has increased from nil when I had my first relapse 21 years ago. The aim of a DMD is to reduce relapses and the severity of relapses. This means that today disability is greatly reduced because of the availability of these drugs. And there are more being developed all the time.

There are also huge advances in drugs, treatments, physiotherapy, orthotic aids, and many other fields which help people to retain their mobility, independence and health.

So if (and at this point it’s a very big if) your wife develops MS now or in the future, your dreams need not be shattered.

Nor, by the way, do her dreams need to end.

Sue

Hello Sue and Carole. You have helped. Thank you so much. Youre right; jumping to conclusions this early is not healthy for either of us. I had a good cry with her last night which i dont think helped… but bigbear doesnt like “botyling” emotions. We joke i have a heart of stobe because i didnt cry to marley and me… so this is indeed new. I remember poorer relexes in the fingers being something MS sufferers might get, so i worry about my wifes hobbies with playing guitar and cross-stitch. But i need to tone down. Relax. We went to her sisters wedding today, which helped also us relax and talk. Very overwhelming with these recent bereavements and a wedding. I will update how things go. Thanks again…Your words are worth their weight in gold and more. All the very best BB

I am sorry you have this trouble at your door, and I hope that it will all melt away and prove to be nothing to worry about. But of course you and your wife are worried - who wouldn’t be?

Even if your fears turn out to be justified - and I hope they won’t be - I would gently discourage you from trying to see around corners to what the future would hold if the worst came to the worst. Even if your wife does have MS, that doesn’t mean it would take a similar course to her mother’s - the world of MS and how it is treated has changed a great deal, and, in any case, it is an extremely variable condition and affects everyone differently. Some people, like your late mother in law, are very unlucky. Other people have more luck on their side.

I don’t know what tomorrow holds for me, but I remember what my neurologist said when he diagnosed me with highly active RRMS, nearly 20 years ago, ‘Don’t go home and widen the doors just yet’. So I didn’t, and so far he has been quite right.

Alison

Thanks Alison for ypur help. I have a slight update. We had a family wedding on Friday… nice way to keep her mind off it… but the Wife woke up that morning saying the numbness had moved up her left side. Rang 111 in the late evening after we came back just for some advice but they wanted us to go A&E again. Because it had spread. Wife had more blood tests. The doctors were more helpful despite being bamboozled. Spent overnight inside so consultant could see her. Everything came back clear. Waiting for letter to schedule a CT or MRI scan now. I should be feeling better after your words of wisdom… This week had been better for the both of us until the wife went back to work… She had a week off work (GP’s orders) and going back today for a 10hr shift on her feet and back in a stressful environment seems to have put us back to square one. This is just an update… not expecting anything more than the lovely help you have shared… but the wife is haunted by her mother’s illness, and i am drowning in questions, worries and my own nightmares of whats gping on inside her head.

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hi again BB it appears to me that her work is doing her no good at all. it is a very complicated issue and will depend on her terms of contract. is she is a permanent employee she may have rights under the DDA (disability discrimination act). you could contact DIALS for information and advice. anyway do some research for just in case.

BB All sound advice above. It is very hard to remain strong and not think too much about the “what if’s” But do try. Worrying doesnt help anyone or the situation. Whatever happens, either way, you cant change it. But you will have to deal with it. So save the energy you are giving to it right now until another day, if/when you need that energy. EVen if your wife did end up having MS as already mentioned that doesn’t mean she will be like her mother. My Aunt has MS too. We are no where near the same. Each persons journey with this disease it different. May I wish you good luck and strength. Let us know. Anne

Hi again. I wanted to write here again after some difficult days. We waited for the letter from hospital and finally came yesterday… scans and etc arranged for next week, on the wife’s birthday of all days. She seems relieved, but after a week of being stuck inside, off work, thinking and imagining every scenario, we are struggling. She reminded me a couple of times the things she’d rather do than live the rest of her life with “it”… if it does turn out to be “it”. I tell her how medicine and treatments are so much better than when her mum got diagnosed… but she’s strong, independent and sharp. Losing any of those three things would destroy her. She had a bad day yesterday, not sleeping and feeling off. I took her to see family and friends which helped a lot. My main worries are obvious, and i need to wait for these scans next week… but if anyone has any coping mechanisms or more advice, or if there’s anything obvious i havent done yet, id appreciate it greatly. Thanks BB

I wish I had some neat, tried-and-trusted coping mechanisms to offer you both, but I don’t. Well, nothing except Chardonnay, anyway, and it’s too hot for much of that.

In my early MS days, people would sometimes marvel at ‘how well I was coping’. What a laugh that was: little did they know! I always replied that I was only coping until I had a better idea. That is still what I think, but actually looking back I also think they were right: I was coping. Just by breathing in and out and plodding on, I was coping. You are, too. When things are seriously not fun, that’s about all a person can manage, and that’s OK.

Alison

Just want to echo what Carole says.

We Msers are very strong and we will be there for you both if you need us.

Stay strong.

Shazzie xx

Hello again. It has almost been 2 momths since the wife’s pins and needles began… and they havent budged. We have mri booked for 2 weeks time at hospital. June was horrible for us. July was trying to get on by, smiling and trying to move the conversation away. I got called in at work because my attitude had somewhat been sharp and abrupt since. Its changing us… how am i supposed to get by if the answer is a bad one. Just wanting opinions… but ever since the numbness moved up her side a week after it started, nothing has improved or gotten worse… well, the recent heat didnt help matters. But recently she has been upset, very tired after work (she’s doing 5+ hours a day now, 5 days a week, but still on her feet all day). I read about the other symptoms and she has none… spot on eye sight, still playing guitar, no involuntary problems and we have been very “active” (more so than ever… sorry). The reason im back is because im struggling to find support again… in a time where normal people in my position wouldnt even need it… but any houghts or help would be appreciated again. I dont want to feel so stupidly dark and helpless like i did 2 momths ago, when ms was all we could think about. BB

hi BB i’m sorry that you are feeling so down. have you had a talk to your gp about your anxiety? if not, you really should. there are meds to help with anxiety. wait it out as you don’t have any other option. above all be strong for your wife. you CAN do that. you’re overthinking it all again. stop it! (said in a bossy voice). where exactly are you looking for support? can you verbally describe your reasons for needing it? i know that you are bright enough to see for yourself that you are overexaggerating the issue. sending a truckload of virtual love and support. carole x

I would ask your wife’s permission to share with your boss that she is a bit unwell and undergoing tests, and so if you’re not quite yourself, that’s why, and it would be good if they could cut you a bit of slack. Depending on whether your boss is a human being or an untrustworthy arse, obviously. There’s a lot going on in your life, and you need to keep some important plates spinning steadily in the meantime, your income being one of them. So keeping your work life stable is worth giving a bit of thought to, if you think that is appropriate.

And of course you need some support and a listening ear - who wouldn’t? If you have a trusted friend whose discretion you can rely upon and you feel able to share, this is the kind of time when friends can really be worth their weight in gold. If you and your wife can talk about things, then great. If you can’t without anyone getting more upset than they feel comfortable with, then that’s OK too - I think the important thing is for you both to know that the other is struggling a bit and cares very deeply and is doing his/her best.

Good luck.

Alison

Hi BigBear90, I just wanted to add my voice to those above. Stay calm and stay strong - for you and your wife. Whatever this is, you’ll get through it together. If it is MS, your wife’s outcomes wont necessarily be the same as her Mother’s - and your future need not be the same as your FiL’s. Treatments, and the attitude to treatment, have moved on significantly in recent years moving the prognosis needle in the right direction for us. There are also more and better treatments in the pipeline which should stack the odds further in our favour. Please don’t let fear of the disease take hold of your lives and impact on the things you love before you know whether MS itself is even going to be a feature. If you do that now, and your wife does ultimately get an MS diagnosis, you are giving it more control than it deserves and letting it get a head start in what may be a life long battle. You mentioned your dream job and that you love hiking. This struck a chord with me and so I thought it may be helpful to share my (and my husband’s) story in case it helps. I was diagnosed with RRMS 2.5 years ago at the age of 36. This was a sucker punch from the blue. My symptoms were mild (numb toes, numb groin and possibly a short episode of vertigo the previous year) and I was fit and healthy and had no family history of MS. I immediately catastrophised. I feared the absolute worst outcomes physically, emotionally, mentally and financially. I looked up the costs of a trip to Switzerland in case I needed a swift exit and tried to get my boyfriend to leave me. We had only been together for 2 years at this point. We had met on-line and the thing which drew us together was a love of long distance trails. He is an ultra-marathon runner. Whilst my running is not up to that distance (by a long way!), I’m a long distance hiker and mountain walker. It was reference to this which drew him to my profile and this is how we spend our weekends and holidays. It is also what a lot of our dreams for the future and eventual retirement thoughts revolve around. I couldn’t bare the thought of “my” illness ruining “his” future - and pushed hard for him to leave me. I thought my MS would mean I wasn’t the girl he had initially messaged on-line, that he had been “mis- sold” his relationship with me and that there would need to be an abrupt end to these shared passions. I also feared for my career (I’m a corporate lawyer in the City working for a FTSE 100 financial institution in a senior role - I’m career ambitious and financially independent). I hated the thought of becoming a financial burden to him. Immediately following diagnosis we cancelled hiking holidays in the sun and a 30 mile hike challenge we’d been looking forward to. We were scared of the heat and its impact on me, scared of over exertion and exhaustion and worried about what someone like me was “allowed” to do. However, he could not, would not, leave me - and made clear to me that come what may, we were in this together hand in hand and step by step. He made the point that none of us know what is around the corner. Whilst we do not know what the MS diagnosis means for my long term outcome, we equally do not know what is in store for him in the future. All we can do is look after ourselves as best we can today for our shared tomorrow - and take each day as it comes. That is all anyone can do - regardless of whether they or their life partner has an MS diagnosis. In recognising that we were both in it “for better for worse” for all the right reasons, we made it official and got married this year. One of the songs we had played whilst we signed the register was Ed Sheeran’s “Thinking out loud” - cheesy I know, but the opening lyrics “when my legs don’t work like they used to before, and I cant sweep you off of your feet…” mean a lot to us - we recognise that they could refer to either of us. And rather than continuing to embrace fear, I decided to find the courage to have hope. Getting a diagnosis and moving on to treatment with an effective DMD was crucial in this mindset shift for me. I realise now not to let fear of the disease take away more from me than the symptoms of the disease itself currently are - this gives it a status it does not deserve. So last year we went on that hiking holiday we cancelled in 2016 and we spent our honeymoon in Namibia - climbing 1000 ft sand dunes in the hot, hot sun. On Saturday I walked 48.5km (30 miles) along the North Downs Way in prep for a 100km walk along the South Coast at the end of the month (to raise money for the MSS of course!!). The following weekend we are up Snowdon (with my FiL to celebrate his 80th(!) - an inspiration!) and later in Sept we are back up to Scotland to bag some more Munros. Next year we are doing the Tour De Mont Blanc - and who knows what comes after that. Oh - and last month I was promoted at work (to Director level). I realise that I’m still relatively early in my MS journey - and I’m also lucky and grateful that my symptoms are currently mild. They may not stay this way - but then I could get knocked down crossing the road or either I or my husband could have unrelated health issues. Whilst we are fit and well, I’m not going to let fear take enjoyment from my life or cut short my career aspirations. Stealing from a well known prayer - “give me strength to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference”. Trying to adopt this approach to our future has helped us enjoy today and still have dreams for tomorrow. I really hope that helps. Good luck to you and your wife. K xx

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big bear

take heed of katy79, she’s a hero of mine!

katy, congratulations on your promotion.

instead of expecting the worse case scenario, that of your mother in law, expect the best case scenario as described by katy.

go cuddle your missus

She’s a hero of mine too. Everything she says is good.

And all that Carole says too.

Sue

Brava, Katy.

A

x

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and sue as well! mutual fan club!

Aww - thanks Carole, Sue and Alison. Always knew cat (and sheep?) people were the best! In awe of the effort and patience you guys put in to make sure everyone gets a helpful response. Xx

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