Last reply 7 months ago
Just to say hi!

I have never posted on a site like this before but I need to feel there are others out there like me, so I thought I should take the plunge and introduce myself.

I’m 51yr old mum of two almost grown-up boys and have had an MS diagnosis since 2001. Apart from periodic numbness and tingling in arms and legs, and a bout of optic neuritis, things have been pretty OK for me til the last few years. Although I’ve had no specific relapses since diagnosis my toes/feet/legs have slowly been getting more and more numb over the years and now they are frankly just really weird to walk on. Aiming to keep mobile, I walk the dog across the Downs daily and go to the gym twice a week – and even did the Couch to 5km programme to get me running (jogging!), although I still can’t manage 5km in 30 mins!! Ever since diagnosis I have been tweaking my diet and started immediately on the BBD back in 2001. Since then I have tried the Overcoming MS diet, the Specific Carbohydrate Diet, and even the ketogenic diet but for now I am gluten and dairy free, with no red meat and very low sat fats. I had some gene testing done and that confirmed I have the APOE 4/4 snp which for anyone who’s not heard of it basically means you are not good at processing fats and it is important to keep the sat. fat levels low, oh yes and also avoid alcohol and smoking….. well I can manage two out of three but a glass of vino on a Friday night has to be had! I’ve never been offered drugs and have now been told I have SPMS which is a tad depressing as it seems there are no useful treatments to even consider….. The menopause is hitting me hard and I am investigating HRT/bio-identical hormone treatment to try to even things out a bit as my symptoms gets so much worse every month. I’d love to hear from anyone else who has gone down this route and how they got on. I look forward to reading your posts and getting to know you all better.

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stumbler
7 months ago

Hi @raider and welcome to our exclusive club.

I shall have to leave it to women of a certain age to answer your final question.

I’d like to think that we might meet whilst walking the Downs, but alas, that’s beyond me now……..๐Ÿ˜Š


raider
7 months ago

Ahhh sorry you don’t make it out walking any more. Getting up a hill and taking in the view is what keeps me motivated to get down the gym whilst I can. I always look at the hikes I do and think ‘hmmmmm could I get a mobility scooter down this path’…… I hope you have other means of getting out and about and enjoy the seasons?


stumbler
7 months ago

@raider , I still maintain vivid memories.

I dare say I could still get up there, if I invested in the appropriate transport. I’ll get that when I’m old…………


raider
7 months ago

Yeah there is a always a cost involved isn’t there and not always appropriate at the moment. One day eh?


stumbler
7 months ago

@raider , it’s not the cost, I just can’t see myself sitting on one. Vanity, eh?


raider
7 months ago

Ha ha ๐Ÿ™‚ now that is just daft! Anyway where I walk there isn’t anyone to see, except the dog! In fact when we did come across a lady on a scooter out in the fields, said dog went crazy barking at her. I had to apologise but really wanted to stop and chat and ask where else she manages to get to. Always got to have a plan for that rainy day..


vixen
7 months ago

Hello @raider, I am the same age but only diagnosed two years ago. Fortunately, I went through an early menopause so thatโ€™s one thing crossed off! There are trial drugs in the pipeline for SSMS, so keep an eye on research…..x


potter
7 months ago

I also went through menopause early and was diagnosed with MS five years later. I didn’t have any menopausal symptoms, my cycle just quit and my doctor did some blood test and said I was finished. Some researchers think the hormone levels in women play a big part in the development of MS. I had symptoms off and on since my 20’s but no diagnoses. I think losing my hormones from menopause played a big part in my symptoms getting worse. Potter

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