Hi, I’ve just joined this site and im not sure how it works. I was diagnosed about 6 months ago with secondary progressive ms, but i have probably had ms for 20 plus years. Today im feeling low, tired and sorry for myself and im not liking it!

Welcome. I’m kinda new also. As yet not diagnosed but thinking I’ve ms after weird symptoms going on for donkeys, years, and a mri that had t2 legions. I see a, nurolgist next week so I’m Hopeing to have some answers soon. I felt low and crap too, lockdown doesn’t help and some days I’m just so tired of being tired.

thanks for replying. I hope you get some answers next week, MS is not something you want but at least it explains alot. What sort of symptoms have you had? and what made you think its MS?I still work full time so when i get home i dont want to do anything- not a good example for my teenage daughter, my house is a tip! I dont want to be a moaning mini but its nice to chat with people who understand

20 plus yearr ago I went to get out of bed, couldn’t feel my legs fell to floor, then I was OK. Never went to a Dr. I’ve then been haveing numb legs, tingling arms, odd pains, terrible pain in hips, stiffness in joints, loss of grip, I suddenly went dizzy earlier this year the whole x world was, spinning I was, falling all over place. Went on solid for over a, month, eye twitched for pushing 2 months, I can’t sleep for paines. Due to my sister passing suddenly from a brain tumour I I siated on a mri scan. T2 legions were present. I then said to gp could this cause… And told her over the weird stuff I’d had for years. Sometimes I feel like, my body’s, weighed down. I’m utterly drained. She said mmm maybe. I had bloods, done xrays all clear she mentioned Ms and I was referred to a neurologist. Due to long Waite I’m paying to see them. I’ve researched ms and I’m certain this, is, what it is but who knows. Hopefully I’ll soon get some answers.

I hope you get the answers, at least then you will know where you stand.

My dad died from a brain tumor and that was what i thought i had when i had double vision. Looking back over the years its easy to see how everything fits with MS, but at the time we put them down to other possibilities. I have a pain in my groin which has stopped me going for walks, and i just thought i stand funny in work and had pulled a muscle - or my speech went funny just for 24 hours and i thought it was a strange migraine, just little things which could be explained. Then 3 years ago my balance and speech went funny - not all the time. i had alot going on at home and at work and i was stressed. I went for councelling and all sorts. My mum paid for me to see a private neuologist and without seeing the mri results said he thought it was MS. My world fell apart - i had not even considered that and all i could think of was my sisters mother in law who had it and was in a wheelchair. Then i saw a NHS neurologist (who had seen scans) and he didnt think it was MS, he thought it was stroke related (to me MS fitted better, but was pleased it may not be MS) after more tests, mini strokes was ruled out and i was offered a lumber puncture to rule MS out but by then my symptoms had cleared and i was told waiting to see if the symptoms came back wouldnt affect any treatment , so i didnt do anything. How i wish i did. Last year my balance, speech and right side have all been affected and I thought it was may be because the seed of MS had been planted and my mind was playing tricks on me. But I went and had another mri scan and tests and have now been diagnosed with secondary progressive MS - which until next year there is no treatment ( if I had been diagnosed 3 years ago it would have been relapsing MS and could be treated to slow the onset of secondary) so now i just have to wait.

Im lucky i dont have much pain, i just wobble into everything and my right arm feels like its controlled by someone eles. also my joints feel stiff especially my knees - but that could be arthritus. There is alot of help out there - a friend swears by accupuncture for help with her MS pain, apply for a blue badge to help parking the car nearer shops etc have grab rails and shower seats and rails for steps fitted - its not nice but they help

sorry ive ranted on a bit, good luck for next week, let me know how you get on

Oh you’ve not ranted it’s nice to hear others stories. I’ve just ignored the stuff going on with me you get used to it and in the mix of brining up kids ect you just learn to live with it. Plus I’d go months with nothing then it would start again and I’d just think I was stressed. Sometimes I feel like my speech is odd is like I’m not controlling my speech, I’ve also noticed I’m very very forgetful and loose track of what I’m saying. I went through a, stage where I’d to get out of bed up to 20 x a night to pee I felt desperate yet couldn’t go or did a timy bit this went on for years then just stopped. I find me knees are hell in the hot weather they feel but aren’t swollen and are so stiff I’m struggling to get up and down steps. I’ve also terrible kneck and shoulder issues. Its like war and peace the list of stuff none of it makes, sence or has any obvious cause. I wasn’t going to bother petsueing a diagnosis I thought why bother if there’s no cure but after researching I feel differently.

Hello Act1…welcome to the club no-one wants to join!

I`m a long timer too…23 years!