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 ?