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Fatigue in PPMS; your thoughts please;

Monya - in fact I said you’re welcome to post but because you have not been diagnosed with ms mention that fact when discussing your problems. Unfair to misquote me. Wish you well. Tony.

I don’t normally do this but feel the need, Anyone is welcome here whether they have a diagnosis (or want to mention it) or not. God knows, some of us still don’t have a ‘diagnosis’. This is a place to feel encouraged, warm, understood, safe, not alone and so many other things that have, for me, helped with this scary unknown. It took me a long time to post as I read through alllllllll the threads. When I did, all I had was the amazing support from everyone on this forum. In not one post has anyone ever told me what, or how I should post. If they had I would have ran/run away.

As I said, I don’t normally do this but I have. I am not out to offend but needed to say this.

Oonagh

Xxx

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Tony I don’t want to offend you but it takes a lot of courage to post, giving out personal information to an audience. I know I feel as if this illness has taken so much of my dignity away but getting questions answered and letting people know they aren’t alone with their problems, also knowing you aren’t on your own is such a massive help.

If I’d received your remarks I think I’d have left the forum which would have had a huge detrimental effect. I come here because people are kind, sympathetic and knowledgeable. I have a spinal cord injury at neck level, do I have to mention this with every post as my symptoms will be different to many of yours?

Please Moyna don’t be dissuaded from posting. We all have different situations and degrees of dis/abilities and don’t mention each problem in every post. Chin up.

Cath xx

My neuro’s not sure if I’m PP or RR Moyna (luckily, he’s trying me on DMDs anyway) but for me my fatigue gradually started creeping in, and after 5 years I had to stop working.

Have you had your vitamin B, D and iron levels tested lately?

I take Modafinil (Modafinil and Amantadine are what’s usually prescribed for MS fatigue) and while it wakes my brain up a bit, it doesn’t really give me any more energy, just helps be use it better.

However, for the past week I’ve been taking a taurine supplement (1000mg) and wow, what a difference. My brain is awake (without the Modafinil, which makes me a bit jittery), my mood has lifted (was starting to worry I was getting depressed and it was terrible during ‘that time’) and I have a little more energy now (although that may be down to my mood lifting).

Best of luck hun,

Mags xx

Hi Mags, please could you tell me what this taurine supplement is, what it does and where to get it. I’ve never heard of it.

Thanks, Cath x

Hi Cath,

I can’t find the original link that the person who recommended it posted but this should help…

http://www.poliquingroup.com/ArticlesMultimedia/Articles/Article/782/Ten_Benefits_of_Taurine.aspx

This is the one I bought but there are a lot of others out there.

http://www.amazon.co.uk/Taurine-Double-Strength-1000-Capsules/dp/B0019LRYD0/ref=sr_1_1?ie=UTF8&qid=1383053372&sr=8-1&keywords=taurine+supplement

If you do try it can you let me know how you get on?

Mags xx

Hi Cath,

I can’t find the links the friend that recommended posted, but this might help…

http://www.poliquingroup.com/ArticlesMultimedia/Articles/Article/782/Ten_Benefits_of_Taurine.aspx

I got mine from Amazon but there are loads of places that do it.

http://www.amazon.co.uk/Taurine-Double-Strength-1000-Capsules/dp/B0019LRYD0/ref=sr_1_1?ie=UTF8&qid=1383053372&sr=8-1&keywords=taurine+supplement

If you try it can you let me know what you think?

Mags :slight_smile: x

Thanks Mags. I’ve had a look but will have to speak to my Neuro as I’m taking a lot of meds and don’t know how they’ll interact. I can see why it might be beneficial.

Thanks again. Cath xx

Hi everyone! I wasnt sure if fatigue was part of PPMS - but having read all the comments, I reckon that might be why I just want to nod off all the time. I sleep like the dead every night, and wake with the weirdest dreams. Sometimes I just feel ill with fatigue, and the more I fight it, the worse it gets. I guess that might also be partly to blame for extreme stupidity, instant forgetfulness and inability to find simple words. Friends now look at me with horror when I lose a word and have to use a description instead. Or could this be early dementia - Ill be 64 next month! Snore on, anyway! Faith WB. XX