Hello my name is Kate,
I’m 37 feel more like 137 at the moment.
I was diagnosed last September.
My symptoms are constant and I’m struggling.
My MS has recently put me forward for disease modifying therapys I’m waiting for my appointment letter.
I have had MS hug constantly for 2 years I had this before I new I had MS.
I also have another painful auto immune problem called lichen sclerosis which is made worse by MS.
I am so greatfull to of found these forums I don’t feel so alone now thank you xxx
Hello my name is Kate,
Hi Kate and welcome. Lots of good folks on here and plenty of resources too.
Hope you’re feeling better soon.
Hi thank you so very much I hope you are well xx
Welcome to the forum.
I’ve just looked up Lichen Sclerosus. Blimey, poor you. It sounds horrible. Add MS to your life and your cup really runneth over with autoimmune diseases.
When you have the discussion about disease modifying drugs (DMDs), it might help to have an idea of what therapies are available and even what you’d like to be put forward for. Have a look at https://mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid What’s most important to consider is the average relapse reduction rate versus the possible side effects. You may feel that a good relapse reduction rate is worth the risk of more side effects. Then again, are you in fact having relapses with either partial or complete remission? It could be that you have the progressive form of MS (if you’re not relapsing) which limits the DMDs you qualify for.
Best of luck.
Thank you so much Sue
I have primary progressive MS so I think that leaves me with one or two options.
Thank fully even though I can’t go out much now i have many craft hobby’s which keep me busy
Due to MS my eye sight is awful I have bad optic neuritis and now they have found cataracts on both eyes to.
I hope you are ok😊xxx
I can only imagine how horrible 2 years of spasm must be, and really hope that the medics can help with some kind of relief.
All the best
PS I am adopting your idea of adding 100 years to my actual age.
It seems that you’ve been damn unlucky. Only 37 too! That seems quite young to me now I’m 54 (and I think I’m going to join Mick in copying you - I feel 154!). Sometimes PPMS can be quite active and move quite fast. Other people with PPMS take years to properly progress. You have my sympathy.
I have Secondary Progressive MS and have had it for 24 years. I’ve been mostly unable to take DMDs, and am quite disabled now, but at least I had a good 10 years with MS when it wasn’t so bad.
I believe the only DMD licensed for PPMS is Ocrelizumab, aka Ocrevus. Hopefully you’ll be a good candidate for it. And equally hopefully you will respond well to it and disability will be warded off for some time to come.
Lol I find add 100 makes me feel better because then I think I’m doing quite well lol:grin:Thank you so much How are you?xx
ON can be nasty, I had 2 bouts of it which ultimately led to my diagnosis of RRMS.
Fortunately it cleared up, my eyesight although still good is not as sharp as it was before.
Sending you virtual best wishes. Retro x
Thank you iv lost my peripheral vision sadly all ready. With the cataracts on top it gets me down a little but I plod on Best wishes to you to xxx
I am pretty good thanks. I have had bad times and good times. Currently feeling very lucky despite numerous aches and pains courtesy of my friendly physio
Wow that looks so lovely where ever you are:blush:I’m off to Wales the beginning of next month to spend 2 weeks with my mum and dad my mum wants to look after me for a couple of weeks xxx
A couple of weeks in Wales sounds good especially with some TLC .
The picture was taken in Pennington marsh near Keyhaven which is on the south coast near the Isle of Wight.
Have a good time. Mick
Hi Kate and welcome to the club nobody wants to be a member of. This is a good forum though, so glad you found us.
Thank you very much Iv just been loosing myself in my loom knitting today to take my mind off the pain xxx
Nice pic Mick.
Nice one, taking your mind off and making something. win win
Definitely that way I get all my Christmas presents done to its a lot cheaper than buying them xx
wash your mouth out!
I am always up for a good swear but use of the C word before November is just rude.
(Just ignore this grumpy old humbug)
Lol That made me chuckle Well today I’m working on a birthday present so that’s not so bad lol:grin:How are you?xx