Hiya, my name is Anastasia I guess was diagnosed with ms due to there being lesions on brain and spinal cord which I think sounds terrifying. Went to clinic in London only for them not to have seen the actual mri scans only what the ‘mri place’ had sent whatever information to the doctor which was then sent to the clinic. Along with legs going numb and having pins and needles, forgetfulness and occasional losing my bladder. Still waiting to see a neurologist on the nhs as there is a serious waiting list and I’m overthinking a lot which doesn’t help my anxiety. I’m worried about the future and I don’t know whether it’s progressive as the doctor was throwing a lot of words at me. Does anyone know any ways to stay calm and not go straight to the darkest thoughts? I’m trying to stay optimistic as I have a four year old but I’m struggling a little. Sorry for babbling.
I was first dx with MS 23 years ago, after having MRI. I remember seeing the scan result being all fuzzy and I couldn’t make out anything tbh.
Thankfully the MS got better on it’s own, but unfortunately it came back about a decade later.
I think it’s good to be optimistic, because in that first decade I was convinced I didn’t have MS anymore.
Hi Anastasia. I am new on here to. I was diagnosed with active rrms 2 months ago. Still a shock but i think i knew deep down last few months that it was looking more like ms i have. The way it was announced to me from a consultant which wasnt his fault. Try and focus on the things u can do other than let ms kick in and think the worst things i know its so difficult as i have so many times been a very dark road at times. I suffer from anxiety and pstd so i over think evey little thing. But what helps me is reading about ms all the positive things u can do to help u. Ms helpline i have called many times have been a god send. Very helpful and understanding. Does give u hope. I hope u are able to feel better soon sorry for long reply. As i keep saying just now kick ms ass
Hi Anastasia. It’s very hard not to overthink and perhaps catastrophise when first told you have MS. If it helps then two thoughts.
The first is my history which might help a bit. Diagnosed 16-17 years ago after optic neuritis ( a common first symptom) I do have trouble walking for more than 15-20 mins, worn out after say 30-44 mins of physical activity and I get very tired (MS ‘fatigue’) in summer heat, and don’t like lots of loud noises. Apart from that I’m not too bad. I had trouble with my bladder for a number of years but that has somehow resolved itself - or I have become better at controlling it. When first diagnosed I feared the worse but so far I’m not too bad.
I found the MS Society Website useful along with that of the MS Trust. Also - and I follow its recommendations- that of Overcoming MS. The title isn’t strictly accurate but along with taking whatever treatment the NHS prescribes it sets out recommendations on diet ( low saturated fats, high unsaturated fats) Vitamin D, exercise and relaxation/ meditation ( from what I recall the website includes some mindfulness type relaxation sessions). The book of the OMS team is also good
For a slightly different slant on MS and diet, here’s Prof Giovannoni’s set of recommendations. It’s what I do. Well, mostly.
Thanks Alison and interesting. I suppose I do ( sort of !) follow this and sort of incidentally have intermittent periods of fasting ( basically forget to eat until mid afternoon) although I probably don’t fast for long enough. Must try it and see how I get on !
Hi. Ive just had my 1st injection of kasimpta yesterday with my ms nurse had a great appointment had it delivered on weds. I have very active rrms. So half 10 yesterday done my 1st one easy wasnt painful at all. Felt postive. About half 1 in after noon started to feel a bit crap tired and then body aches and weird sensations then this awfil headache couldnt fall asleep with it even brushing my hair was painful pouring of sweat weak but shivering like mad. Drank plenty water took paracetamol eased it alot. Had a very good sleep during night tbnakfully woke up still not great but headache is gone couldnt cope with that i suffer migrines aura ones. This was on another level. Eyes seem to be buring like flu type. But apart from that am okay. Been told to do next injevtions in the evenings now i can see why. U wouldnt be able to function if took this in morning had a big day ahead. Hopeing this will ease as more i take. Body gets used to it. Really wanted to know others experiences if u take kasimpta. I knew may react but wasnt prepared for half of it. I dont like complaining to my family but my 11 year old took one look at me gave me a much needed hug said mum u pls rest am here u dont look well at all. feeling hopeful though dont mind going through this once a month if gives me more chances. I have more brain lesions than spine but they starting to think spine is catching up with number of relapses ive had past while symptons with legs etc. Love to hear if anyone had any experiences on their 1st injection.
Hi Casey. I’m not on Kesimpta but your post reminded me of the first few weeks of Avonex injections - some 16-17 years ago.
After the first injection I started shaking uncontrollably during the night - don’t mind saying I was kind of scared although the shaking passed after an hour or so. The next few times weren’t as bad and I guess my body gradually adjusted to the weekly injection. I still take paracetamol, still get headaches and feel tired for a day .
That happened to me once, years into my decade on Avonex. I was glad when it didn’t ever happen again. I recount this story just to say that things that happen once do not necessarily happen again.
Hi Hank_Dogs thank u i feel totally normal now i am prone though before ms diagnosis with infevtions like pneumonia utis kidney i am aware that kasimpta can make u worse which doctors ms team all aware. Its scary that yestday after the 1st injection did get scared cos sweating buckets but shivering non stop headache ive never experienced i have had sone awful ones this was scary to. Just kept calm and rested. Today feel bk to normsl a little spasticity in back of legs but took muscle relaxcent seem to help pain. Life is hard for all who has ms really is its a prosses and learning as we go. Thank u for the response appreciate it. Hope u coping okay wish everyone the best and hope can all kick ms ass