Last reply 9 months ago
Rapidly evolving sever ms

Hi all,
I’ve had a whirlwind of a time over the past 12 months. It started off with sever dizziness that was put down to vertigo. I went to an ENT specialist who did an MRI. They found leisions on my brain and reffered me to a neurologist. The neurologist took a bit of a history from me and said I have rapidly evolving sever ms. He said it was something to do with the number of relapses I’d had in a 2 year period. It was quite a few. Somewhere in the region of 12. Turns out most of the health problems I’ve had for the past 10 years were MS related. No one put two and two together. I was told in that diagnosis appointment that I could go for lemtrada or tysabri. I chose lemtrada. It was quick. I was diagnosed in September and was supposed to have treatment in November. I had an infection so they couldn’t do it, so it was put off. I then eventually had the treatment in December. I haven’t really had an improvement in my symptoms but I’m glad to know it shouldn’t get any worse. Yes my life has changed. But, the way it changes is up to me. I use a wheel chair to get about but that’s cos it’s quiker and less tiering and actually gives me more independence. The dizziness is still there too. I also have emotional and anxiety issues, to the point where I was having panic attacks most of the time just for the fun of it even though I knew the reasons were stupid. But live goes on. Most of the meds I’m on now keep the anxiety under control. The pain meds are still being tweeked so hopefully a balance will be found soon. I started my own blog that I use as an online diary and write about whatever I feel like. If anyone wants to have a look feel free. http://www.humbugdance.com have a look and leave a comment, that’s if you want to. Anyway hope everyone is good.

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edmontonalberta
9 months ago

@bumhug

You say that the way your life changes is up to you. Yet when I read your blog, I see alcohol, nights out plus red meat… Do you want information to help? Or have you resigned yourself to a downward spiral?


bumhug
9 months ago

Any information would be welcome. I don’t see my self as on a downward spiral but my writing may indicate that. I’m sorry if that’s the case it’s not intentional. I like to spend what time I can with friends as they are a very good support network. I don’t drink that often, mainly if I’m out of that makes sense and that isn’t very often. Red meat, I love a good steak but who doesn’t except vegetarians obviously. Lol. But yes any information would be greatly appreciated. Thanks in advance.


edmontonalberta
9 months ago

@bumhug

Thanks for getting back to me. The old saying that “we are what we eat” is for a reason…

No eggs, no milk, no red or processed meat. Don’t get me wrong; I’ll have some smaller tenderloin steaks on the BBQ over the summer plus an omelet once a month. But overall it is fish & chicken since they are healthier & easier to digest. Plus I love pizza but that also is only once a month…

Vitamin D every morning with my coffee; fruits & vegetables are part of my daily diet. I’m not expecting to get better; just hoping not to get worse.

And yes people are more important than possessions. It appears you have some good friends & your Mom on your side. Treasure them…


bumhug
9 months ago

Thanks for the information. Some of it I didn’t know and haven’t herd befor. I do take Vitamin D on a daily basis though. Think it was one of the things the neurologist said in the first appointment. Don’t think my diet is too bad though. I live with my parents and they are always dieting so I eat what they do. Yes there is the odd occasion though I will binge on junk food. Only so many salads you can eat lol. I do eat a lot better than I used to though. And my parents have been great I wouldn’t have been able to cope without them.


bumhug
9 months ago

The main thing I have issues with is sleep. Seem to struggle getting to sleep. There have been night when I’m awake all night. It gets so boring so spend most of my time online with YouTube, or watching tv. Think this site will be a very useful resource though.


stumbler
9 months ago

Hi @bumhug (love the username!) and welcome.

You’ve been on a bit of a journey, haven’t you? Hopefully, the Lemtrada will have your MS on the backfoot and, with age on your side, I would hope that you start to gradually improve. Although, you have to allow your body some downtime to achieve this.

As far as diet and lifestyle are concerned, quite a few members follow the advice provided here :-

https://overcomingms.org/

As for relaxing and switching off, mindfullness is a useful option.

Have a read and see what you think…….

You also might want to enquire about this place, http://www.tmstc.org/ . It may look like it’s inhabited by a lot of old, knackered people, but there’s a wealth of experience there. They also provide a lot of useful complementary therapies, at a cheap price.

I had a quick look at your blog. It’s an easy read, with a nice flowing style. 😉

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