Hi guys,
I am currently on ocrevus treatment after having a fair few relapses over recent years and I cope well with it. But I find around 3 weeks before treatment is due, I suffer from "old symptoms" of MS which are normally controlled well. I'm really struggling with leg pain and fatigue, which were the symptoms I struggled with the most when I was first diagnosed in 2024. Does anyone else find this happens to them?
Hi all you lovely people.
I've been reading on a few forums for quite a while but been to scared to join or ask any questions.
Please feel free to tell me if I'm doing anything wrong I'm not at all good with technology !
In 2017 I started to experience numbness in my right leg and foot and my face .
The feeling in my face returned within a few weeks but unfortunately Its not been the case with my leg and foot.
My foot feels rubbery and you could quite literally stick needles through my toes without me feeling anything .
This obviously has a impact on my walking and affects my balance quite alot.
I've experienced vision problems , mainly blurring but the most recent ,last year losing the colour red .
I experience bladder and bowel problems and extreme tiredness.
I've had a lumbar puncture which was clear .
My MRI showed 4 lesions but the other one they do , is it spine or something ?! was clear of lesions .
After a few appointments with a neurologist ( 2 ) she diagnosed probable MS .
When I asked about treatment I was told No as I dont have MS and do not fit criteria.
I've not seen a neurologist since but have had more symptoms .
when I've been taken to hospital for other things Drs have looked in my notes and said I have MS .
I'm so confused.
Id to ask for treatment but need my facts right first .
Oh also vital point 18 years ago I had quite a big incident with my sight , I needed to have my baby early because of this .
I had an MRI of my head where they found a few lesions .There was talk then of MS but I was young and didnt like what they were saying so never went back .
I'm so sorry for the stupidly long message.
I would just like to know , would it be reasonable for me to ask for treatment?
I dont want to deteriorate any more .
Hi all. I see new treatment for spinal injury, a method of allowing the brain to move limbs. Optimistically this may help people with ms.
Best wishes
Peter
Hi,
something that has recently been niggling me is why have I never been offered any 'treatment' for my MS..is the no treatment route a common thing? am I expecting something that doesn't generally happen? I've had MS since 2003 seconday progressive since 2011 according to neuro'.. personally I think I've always been primary progressive..I have no memory of any 'remissions' just never ending symtoms and an insidious decline..the only thing I was ever offered was Gabapentin for my leg pain which made me feel ill..
The thing is I went to see my GP not so long ago about something not MS related..well she was a locum..they are all locums at my surgery none ever stay long..anyway for some reason she asked what treatment I was on for my MS..I said none..she was so shocked..she said I must have 'slipped through the net' and apologised profusely I was quite shocked by this..it started me thinking if things might have been different..maybe I would still be able to walk..maybe a lot of things..maybe I was diagosed too late for treatment..I only see my neuro' once a year so come September if by the responses on here it seems usual to have treatment I will bring it up with him.
Fran x
A close relative is looking into treating her RRMS with HSCT. As Europe is the most viable option I'm interested to hear about any experience from Karolinska University hospital in Sweden.
I've managed to find a blog from a Norwegian woman describing her experience and her life after the treatment. By contacting the hospital I've got the info that they have expanded the capacity and how the process looks like. I'm however looking into additional sources of information. Do you guys have any input? Thanks
http://mindevenmore.com/
http://stockholmcare.se/Upload/Autologous%20hematopoietic%20stem%20cell%20Transplantation%20for%20MS%20patients.pdf
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