Loved you video ... about 6 yrs ago the tips of my fingers went numb then about a year and a half ago I went numb from the chest down. I was in hospital for 9 days and got the diagnosis of ms. Take care my friend!!
+Rodney Power thanks for watching. I have had a number of different loss in sensations too. My face and tongue, my feet and lower legs. My next couple of videos are about this. At the minute though I'm doing ok and I hope you are too. Keep fighting and keep smiling.
Thank you for your video and for raising awareness. I was diagnosed 8 years ago after 2 years of GP visits. Numbness in my legs and pins and needles was my overwhelming symptom. Doctors just kept checking me for strokes. It kept getting worse and while I was on holiday in the UK with my parents for a few days I realised I couldn’t walk very well. That night I came out in a rash all over my back, I thought it was bites or chicken pox. The next morning I woke up and was numb from the waist down and my feet felt freezing, even though they were warm to the touch. By this point my dad had enough of me being fobbed off by GPs and paid for a private MRI which diagnosed it. It’s a bumpy ride and tough but relatively under control with Copaxone.
+Miss DogLover thanks for sharing your story. I think my diagnosis was very easy and straight forward and it seems strange to me how for some people it is so difficult to get a diagnosis. I guess the doctor's don't want to panic people but a simple MRI would have sorted your diagnosis out so why were they faffing about. Anyway better the devil you know! So how do you get on with the meds?? Mine (Betaferon injection every other day)seem to work great but the injection it's self is causing me MS like symptoms and this is getting worse so it may be time for me to change. Thanks for the chat and hope to speak again soon 😏🎗️🧡
Hi Ian, your comment on my channel sent me over here, and I've just watched your video. WOW! What happened to your eyes must have been megga scary!! This sounds very different to what is happening to my vision at the moment, which incidentally is perfectly fine (as I'm typing this message). Not the case earlier this afternoon though, I was very blurry. This is what I just can't work out, the blurring is very random and there's no pattern or trend to it. But like MS really!
+Neil Bradley my experience with my eyes since has been that when I become tired it shows in my vision. I do feel my sight can be poor when tired and I find it works as an early indicator as that hits me first.
I don't think I'd be as bad as I am today if I woulda had decent doctors. I had eye spot that spread with gray vision, went to the specialist, she said I had some allergies but that was all. That was 2013. Couple random bouts of numbness in left foot, leg and hand but always went away. 2017 I went to the doc with that numbness again that didn't go away and was getting worse. I had tried to use a platform step for exercise and noticed my legs went to jelly (luckily the chair was right behind me). "I overdid it" I thought. Weakness got worse. I'd be walking in the store and just know it was kicking in so I'd have to go sit down. I told my doc this, had her check for diabetes, she said I didn't have it. I went back again and said maybe it's MS. She said I have no symptoms of MS (really?? cos I get migraines, I have hypothyroidism -- which another doc thought was herpes or syphilis but nobody would do an MRI until AFTER I was diagnosed with hypo and then I didn't feel like paying for it cos I knew what I had! -- the muscle weakness, the numbness, VERY low vitamin D, spasms, etc. But she said to stop looking things up online and to lose some weight and exercise and I'd be fine. I said I HAD been exercising and had to stop cos of the weakness. She said "You have the weakness cos you stopped exercising." So I guess she knew better than I did?? Meanwhile, she referred me to a neuro for "peace of mind" and I put it off for 3 months cos I was afraid they'd think I was making it up or lying. She put that in my head that I was fine. I got the MRIs, lesions in brain and spine. I got the spinal tap, multiple o-bands. I've gone downhill since 2018 when I first went. MRIs from the other week show no new lesions but I need a cane and can't even walk from one room to the next without resting. Several bad reactions to glatiramer acetate shots (and glatopa when I was switched without notice). I get they're supposed to help, and I have no new lesions, but I've gotten so much worse over the last year. My neuro wanted me on Baclofen but one of the possible side effects is ovarian cysts in females and I really don't wanna risk something else to worry about. Plus I think that would be worse for bladder issues and make my legs feel even weaker (luckily the spasms aren't as bad after my Vit D got back up but they sure did a number on my back). Finally having someone tell me "these are symptoms of MS" was such a relief after being brushed off for so long. Now I'm just terrified of where I'll be by next year if things changed so much in the last year.
Also, I've been on the shots (generic Copaxone) for 8 months and still getting worse. I've never really had relapses except years ago when the numbness would go away after months but this time it's been here for years. Occasional stabbing pains in my legs and eyes like a needle and it makes me jump, which looks weird if I'm in public. And the itching! What is with the itching?! I know it's a nerve thing but omg, it's just relentless some times.
This all sounds so terrible. I don't know what to say in response. Your journey sounds like it has been so difficult. I can only really offer my hope that you will improve and maybe find some meds that work for you and I do hope you can remain positive as I do truly believe that is what has worked so well for me.
@@MyMSstory It was easier to stay positive before but that wore me out lol! I'm glad I didn't have to go through this decades ago like a lot of people. Can't imagine how hard it was to convince doctors and the lack of meds back then!
I have a blurry eye for a few months, lots of muscle twitching, weird body tremors in the morning and a traveling pain. Im very scared of ms or als. :/
MiniJaguar it is big long journey living with MS and feel very lucky with my progression. I know of people who have it far worse than me and I always think about how I could be so much worse. Don't be scared of your MS as it is a piece of you and it is a part of you that you need to try to get to know. If your having a bad day then think about a good day, if your symptoms are limiting you then just do something that you can succeed at. Stay Positive and keep in the light and don't let the loneliness and darkness of MS take over. You've got this far and your still fighting so you can do this 😁
