48 years old in Northwestern Ontario Canada, I'm scared and crying... End of my rope...

Welcome and introductions
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Hello , I know this forum is for peoples in the UK but I haven’t found anything for peoples in Canada so I’m posting here. I’m crying my eyes out right now so if I don’t make sense please bear with me .

I have been told I have MS. I had episodes of pulsative tinnitus so last year I went to the doctor and got an MRI to find out if circulation problems were cause the tinnitus. MRI came back and the doctor said I have MS. She gave me a copy of the MRI report and said I refered you to a neurologist . I didn’t know what MS was so I asked. She said some peoples with it end up bed ridden and some peoples never know they have it and go their entire life without knowing. It’s very unpredictable and there’s no way to tell how it will affect you. Ask questions to the neurologist when you see her. I asked about the tinnitus , was told to ask neurologist about that too.

Since then the tinnitus is no longer pulsative and no longer once in a while. It’s been non stop ringing in my left ear since November. But that’s no big deal . I can deal with that…

I took the copy of the MRI report out and read it and it does say MS on it and goes on to say the many lesions and places they show up on my brain , something T2 and Flair positive , very complicated but in bright yellow marker on it it says conclusive with MS diagnostic , meeting right neurologist needed.

I am now very sad and very scared . I don’t want to be incontinent , not able to clean myself or take care of my husband and houseworks etc . In 15 years we want to be enjoying retirement , not with me a burden who can’t even use a toilet and is wearing a diaper… I know being in a diaper is not the end of the world but it sure is a big part of being disabled and it can’t be good for a couple . What’s romantic or sexy about a disbabled wife in a diaper ?. And MS would mean we won’t get to grow old and enjoy retirement like we want to .

I don’t have a family doctor . There is none where I live . So I feel lost and abandonned… I call the clinic crying and the nurse was very kind and said she will look into this tomorrow ( it’s almost closing time here) and will call me back .

I am worrying about MS now ( this week) . BUT that’s not all… I had diarrhea since March 1 , non stop , sometime 5 times a day . I got all the bloodwork under the sun , all came back normal ( except one who was slightly elevated but nothing to worry about) . All fecal tests came back normal . I have an appointment with a surgeon for a colonoscopy and endoscopy on the 25 . The 25 is just to talk about it and if I’m ok with it to schedule the procedures. ( Of course I’m ok with it ! but the consultation if standar procedure so we can’t skip it . ) I lost 15 lbs , I have no appetite whatsoever and when I do eat I feel full after a few bites. And my poo is now every colors of the rainbow except brown. And I lost 15 lbs in a month without even trying .

And I had MGUS since 2018 , that makes me more at risk for blood and bones cancers.

The MGUS was a lot to take in an accept ( I still haven’t accepted it ) but with the stomach problems and not MS too it’s just too much … I can’t take it… I’m cracking…

I’m so tired … I go to bed at 8 pm and I don’t sleep much but after I get up to serve breakfast I stay in bed until 11 am … I have no energy whatsoever … I used to enjoy watching movies in the evening . I can’t stay up past 8 pm now …

And after understanding what MS is how can a doctor just say , no answer for your tinnitus but your brain show that you have MS. A doctor who has been reviewing MRI since 1966 says you have MS . So you’ve been refered to a neurologist . That’s it , that’s all, it may or may not affect you later on ( but everyone say it does ) bye, oh btw you also don’t have a family doctor anymore and there is no family doctor available anymore so good luck …

Sorry for writing so long … I just can’t stop crying … I don’t have any friends and I don’t have any family either . My husband is my everything. We’ve been together for almost 25 years . I’m also autistic.

forgot to say my left leg is also weaker and I had pain in my knees for 8 years now . But I don’t have problems walking. I tried cortizon ( spelling?) shots in my knees and they only helped for a week each time I did it . Also tried gel injections , did nothing.

my weaker leg and knee are on the left side . My tinnitus is left side too . Pain in my knees are worse if I sit for a long time ( like car rides ) or do the stairs many times in a day . And it’s constant , always weaker on one side . It doesn’t come and goes so I guess that can’t be relapsing MS . That and my age would mean it’s the other bad type of MS ?

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Hi there. You most certainly are having a hard time! I live in Scotland , 70 years old married male and have had MS for about 18 years. I must admit that MS has been getting a bit worse this last year but I’m still able to walk and was out in the garden yesterday cutting hedges and doing a bit of weeding and today I’ve been pottering around the house doing a few exercises. During the coming week I will be meeting up with friends for lunch. So - yes MS is a real swine but it’s not the short cut to a miserable life of disability that it used to be.

I am assuming that when you see your neurologist you will be offered a disease modifying drug/treatment. In my case I use Avonex which is a weekly self injection ( makes me feel a bit rubbish for the next day or so but it’s not too bad). Avonex is one of the first drugs developed for MS but there are now many more available and many of these are more effective than Avonex.

I also follow the suggestions from a website and book published by an Australian professor of medicine. He has MS himself and basically recommends a good diet ( low in saturated fats, high in unsaturated, keep sugars low etc) plus Vitamin D ( sunshine or supplements) exercise and mindfulness/ meditation. Plus whatever disease modifying drug you are one. Do have a look at the website ‘Overcoming MS’ . It’s not offering a quack cure but makes recommendations on how to support you body in resisting the effects of MS. I provided me and many others with a feeling that there are things I can do beyond my weekly injections.

I hope the above has given you some comfort ( oh and although I do take care to check that e.g when I’m in town there are some public toilets not to far away , I don’t feel the need to use diapers and have only slight problems with my bladder and bowels. Basically I sometimes have to rush to the toilet to empty my bladder and I need to make sure I eat plenty of fibre and drink plenty of fluids to prevent constipation- a common ailment for those with MS)

All the best to you

2 Likes
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Thank you , I’m still a mess this morning… But I appreciated your reply

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Hi angel,
I know how you’re feeling, here in the UK is only a neurologist who can diagnose MS.
My GP thinks I have it, but I have to wait for an appointment with a neurologist, which there’s a 6 month waiting list. I haven’t even had a MRI yet. So at least you’re a step ahead of me.

The MS society webpage has a lot of helpful information. I’ve also watched a few videos of celebrities that have it. Like for example Selma Blair. She walks with a walking stick, but she still walks in heels. :smiling_face_with_three_hearts:

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Sorry to hear that you have had such a lousy time. However, I know how difficult it is to NOT think about the “what ifs” and all the uncertainties. It does not really help and in my experience actually makes things worse. Many people lead normal happy lives and just try to deal with stuff only IF it happens.
I do recognise it is easier said than done and wont be offended if you think I am being an idiot. I hope you have a good network of family and friends who can share the good stuff and support you IF there are bad bits.
All the best Mick