Patients Multiple sclerosis
Topic of the discussion
Posted on 11/12/2014 11:35
I am new to this site but unfortunately not MS, however i dont let this bugger get to me (ok sometimes it does).
Beginning of the discussion - 11/12/2014New to the group https://www.carenity.co.uk/forum/multiple-sclerosis/your-opinion-on-multiple-sclerosis-treatments/new-to-the-group-163
Posted on 11/12/2014 13:20
Hi spacejammed. Welcome :) It's great to see some "fight"! I also have had MS for quite a while and do my best to stay on top of things.. Although I am not really sure what I am supposed to do to control this disease!? So I try and eat healthy, stay active and in general - be positive :)
Posted on 27/12/2014 20:48
in new too , just found it ,lets hope we enjoy it and
get some good info to help us
Posted on 25/01/2015 14:11
Hi I'm a newbie too. SPMS mobility getting more restricted but life still good - most days! Looking forward to connecting here and maybe gathering useful tips etc.
Posted on 27/01/2015 18:54
Hi all, another noob here.
I'm also a MS sufferer, in the UK. Looking to reach out and connect to meet some new people. Always happy to chat...
Posted on 04/02/2015 19:39
Hi everyone I'm new too.I suffer with M.s was diagnosed bout 5year ago.I'm in that u.k and looking for new friends x
Posted on 06/02/2015 13:09
I'm another "newbie", only formally diagnosed with MS in very late 2013 but probably initially started with this in 1977 but diagnosed and treated as trigeminal neuralgia. The majority of my MS symptoms e.g. bouts of overwhelming fatigue, memory/cognitive problems, muscle cramps/spasms, balance issue etc only became increasingly problematic about 9 yrs ago, although I attributed these various symptoms to possessing an extremely busy, responsible and stressful occupation, increasing age (currently 63), chronic osteoarthritis - anything BUT MS! It was only after being hospitalised with a hypertensive crisis (bp - 210/120 and a pulse rate of 128) which made me think I was having a CVA - stroke), after experiencing unremitting double vision for over 2 1/2 weeks, that I felt I could no longer DENY I had a "problem"! I was initially prescribed baclofen, the drug of choice, according to my MS Nurse but due to needing ever increasing dosages (which after 3 weeks, caused uncontrollable whole body spasms), therefore was subsequently prescribed diazepam in late April 2014. Have subsequently experienced daily MS symptoms, in varying degrees, without any obvious remissions but next review with MS Nurse is probably this April. I feel I have changed (and probably continue to do so) so much in the past 2 years, physically, emotionally, psychologically, both positively and negatively - therefore often feel I am on a "journey" of discovery, possibly because my MS symptoms are now totally unpredictable. In the past I was able to recognise that pushing myself too hard always brought "consequences" i.e. not being able to "function" for 24-48 hrs and was able to proactively balance activity with relaxation/rest periods but unfortunately now although this can still occur, have conversely found the muscle spasms/pain, "brain fog", paraesthesia etc comes and goes (to varying degrees on a daily basis) WITHOUT doing anything. I find my MS seems to have "a mind of its' own" and although extremely intriguing, wish I had a "magic wand" and no one ever had to experience it!!!!!!!!!!!!!!!
Posted on 14/04/2015 23:10
Hi to everyone .. Just came across this site and joined. Have PPMS and CFS .. Migraines, possibly Sjögren's syndrome and arthritis!! All in all I'm knackered!! Lol. Am 51 and recently completed my BA and very proud but too poorly to use it and work!! Gutted and fed up but I'm still here and still standing .. Anyone wanting to chat feel free x
Posted on 18/04/2015 15:13
Hi Vanessa - welcome to Carenity! I'm sure so many of us can empathise with your situation re: being "knackered"! Good for you girl - completing your BA even though you're not able to "use" it but the main thing is you've done it and am also soooooooooooo very proud of you for doing it!!!!!!!!!!!!!!!!!!!! I have had osteoarthritis since my mid 20's (now 63 yrs young even thought I frequently feel like I'm in my flipping 80-90's!!!!!!!!!!) and informally/verbally confirmed with my MS Nurse last week that I now have SPMS (in contrast to my initial diagnosis of "Benign" MS about 2 years ago). So glad you came across the Carenity website - personally think it's a real boon and awfully therapeutic!!!!!!!!!!!!!! LOVE your attitude - "Gutted and fed up but...still here and still standing"!!!!!!!!!!!! Know that feeling all too well as I'm sure sooooooo many others do too but it's soooooooo important that we all stay as positive as possible and not let our condition(s) get us down too much or for too long!!!!!!!! As long as we keep up this attitude, we will hopefully continue to carry on regardless!!!!!!!!! Ann x
Posted on 06/08/2021 18:32
Hi I'm cara I'm 42 yrs old I have type 1 diabetes. Lupus. Ms inhavw tonwalk with a stick because my mobility is so bad and also have carers come in every day I try to stay active as much as I can everyday is a battle but I refuse to let my health beat me I'm newbie here also nice to meet you all and ty for excepting me xxxxx