Hi emz
All the best with your treatment. I too am JC positive but went for Tysabri, I think it has helped me. There is a Tysabri Facebook page which may help. I hope it all goes well xx
Hey pops,
Thanks, wow do you feel better with the treatment, and the JC hasn’t affected anything? I was going to check the MS on Facebook but it will be public I don’t want myself to be out there yet. X x
It is said that a little knowledge is a dangerous thing. I don’t want to create alarm to what is already an frightening subject but my experienced is worth reporting.
I had two unsuccessful attempts at lumbar puncture puncture. On the first occasion a doctor strolled on the ward and announced to nobody in particular, “This is my first time.” I was already very nervous, so by the time he found a bit of my spine that wasn’t anaesthetised I was in total meltdown. The nurse, who was holding my hand, told the doctor and the LP was immediately abandoned and the doctor flounced out without a word. His excessive pride and arrogance showed him up in front of a nurse and I don’t think he liked that.
I refused to have the second one because the tranquilliser didn’t work. I told the neurologist that I wouldn’t have another unless I was unconscious. At first he said that wasn’t possible but had second thoughts some time later. It was eventually done at St Georges, Tooting. and I don’t remember a thing. But I had to have this done as it was needed to fulfil the McDonald criteria.
The next time I saw the neurologist he baldly stated, “You’re right. It’s MS” and told me to see the MS nurse from now on. My wife, who was praying it was something curable, was distraught. The bastard (sorry; neurologist) left the hospital building before we did.
Anthony
Hi
As I say I think the tysabri has helped as I have had only one relapse this year. Being JC positive hasn’t caused any problems, my blood tests have come back fine and my recent MRI showed no new lesions. I feel drained for about 36 hours after the infusion but then I’m OK, or as OK as possible. For me I will continue with Tysabri for 2 years then see how my JC is then decide if its to continue.
Xx
People, tell your children: when it’s trainee day at the lumbar puncturists’ or the bikini waxers’, just walk on by and keep walking.
Alison
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My LP experience was entirely different. The trained dr was showing the trainee what to do and he tried 3 times to get the fluid and was unsuccessful but then the trainee tried and she got it first go. I wouldn’t say it was the best experience in the world but it had to be done and I had no after effects apart from tiredness.
Mags xx
Hi emz. My first symptoms was ON too. I was 19 . The though of MS at that time scared to to death I’m now 27 and little has change for me. I think MS has changed alot Even since when I was diagnoised. It’s Become more manageable and there’s more treatments. At first I jumped to the worst and after a tiny bit of research Realised it wasn’t that people with MS just carry on and enjoy there life’s
Hey siyman,
thanks for the msg, yeah it was the first thing that made people think something wasn’t right the neuro said he thinks I have had it for a while, but docs put it down to tabs instead, wow 19 is a young age it must have been quite scary for you I know I’m going through a lot of emotions daily. They are putting my on the iv every month, and given me lots of leaflets etc I can’t bring myself to look at them yet but I know I can’t keep avoiding it either. I haven’t been able to work either. I have been told the is a Facebook page as well but I don’t want to go public with it yet either, I haven’t told anyone just family. X x
There’s no reason why you have to go public if you don’t feel like it. The neuro said to me just get on with your Life and enjoy it. She was right. And was very positive about MS. She said to me it’s the best time in the history of humans to have MS lol. Also it was a scary though at 19 and my mind would run away with me. But 8 years on touch wood I feel fine. I still play football with my friends go out and have fun
Hi Emz,
Sorry about diagnosis Emz. I’ve had MS for nearly 30 years, sounds a really long time. Diagnosed 1998. I only told immediate family as symptoms weren’t visible - numb arms, legs, feet. Only when my walking was effected I had to tell people.
Chickened out and just sent a round robin email to everyone - couldn’t face telling lots of people.
Had MRI and LP - sedated for MRI as get panic attacks if I feel trapped. No problems with LP told to lie flat for 12 hours and drink plenty.
My top tip - have a MS notebook and write down dates all your symptoms and how long they last. Any appointments/ medication etc. Comes in very useful if you apply for a blue badge or MS nurse/neurologist asks you questions about your MS.
Trying to explain MS to people is tricky. I often say I have so many steps per day (as my walking is really bad) and have to use those steps very carefully. Pace yourself.
Take care,
Jen x
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Hi Emz
So sorry about your diagnosis - Ive had MS for 4 years now. All of the people that know me well know I have MS. I dont hide it particularly but I dont shout it from the roof tops either - everyone at work knows because I am part of a team & due to where I live I have to travel a fair distance so I work from home most of the time - so its easier to just be honest with them rather than them asking why can "she work from home at not me " !
But you are braver than me -it has taken me ages to actually post on here i.e only recently. I used to just read all the posts which helped me through all the ups & downs of the MS rollercoaster.
K
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Hey god rat,
thanks for the msg, wow 1998 how was that for you? I only found out a couple months ago after things went a little crazy quite fast, I have the numbness, tingling, bad eyesight in right eye from ON and quite unsteady, and tremors and slurred speech, I popped out today not very far and People were looking at me coz I was unsteady I swear they thought I was pissed I felt awkward and inadequate, and I was getting angry wanted to shout at them but I sat down had a cuppa and tried to forget it. X x
hey Mrs fox,
thanks for the msg, how did you feel when you first found out? It’s good that you have that opportunity to do that to make it easier for you, unfortunately I’m not allowed to work as I also have mental health issues I had a pip assessment today which was quite scary for me, having to say out loud how difficult things are at the moment was horrible hated admitting it all coz I’ve not admitted to myself which was hard the lady was nice, helped me through it all, I popped for a coffee after wit family and people looked at me funny coz I am unsteady which made me feel horrible. The pip assessor said think about getting a walking stick but I’m not ready for that I said I’d think about it. One step at a time I guess. X x
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Hey guys,
after my concerns of people seeing me unsteady and making their own assumptions and telling people gossip after seeing me, also that I’m needing help to walk at the moment and my kids friends are seeing me like that I don’t want them having people talk about me like that, is it the right time to tell people before gossip starts and my kids don’t get stupid questions? Not sure what to do…X x
Hi
You really are having a tough time at min x
Its a personal decision when & who you tell. It maybe easier once you have told one person & has you say better than all sorts of other gossip that may go around.
With regards to walking aids - after I fell over / stumbled a few times I purchased a fold up walking stick £8 from Amazon its black ( so goes with everything) with flowers on. I dont use it all the time but carry it with me so its there if I need it. I think just knowing its there helps - if that makes sense.
K x
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Hey,
It isn’t easy but can’t imagine it is for anyone Hun, but having the pip assessment yesterday and having to be honest and tell everything that goes on which I haven’t even been able to admit out loud to myself and then walking past people staring at me as I walk unsteadily is an anxious and uncomfortable feeling I suffer with anxiety as it is so it made me get angry and wanting the floor to swallow me up at the same time, sounds silly I know. I only noticed it this morning walking up to my parents with my mum which is only 5 mins away and her having to help me walk which doesn’t feel right to me then my sons friend just stared at me funny it felt horrible and I’m a private person but I don’t want my kids to get taunted or mocked because of me. I have been told about walking aids to help but I get conscious I know it’s stupid and a help is better than no help. It’s just scary for me. But I know at some point soon I can’t hide it much longer. How did it make you feel knowing you would need something to help you at some point?
sorry about the essay. X x
Hey guys,
I can officially say I can’t wait for this wkend to be over, first the assessment fri which was a little difficult for me then people staring after, then yesterday the pup decided to jump over a wheelie bin over a gate to get out the garden I was on my own and couldn’t bloody to anything I shouted his name took a few steps I couldn’t even walk fast, a nice fella saw him and heard to shouting and brought him back, God forbid what could have happened otherwise it scares me coz I don’t want that on my conscience and I have no control, we now can’t be in the house on our own I’m getting angry and feeling trapped and hate it, I had to msg my daughter she came down and took us up to my mums to which 3 cars on the way we’re slowly driving by and staring and me and my daughter said mummy you need to hold my hand coz people are looking at you walking I got so scared I hated it. So she ended up walking me and the dog and she is only 13, I’m feeling alone and angry but I have no where to put these feelings. So I’ll keep them to myself nobody should have to put up with my mood swings and frustrations it’s not their fault. X x
Hi Emz
Everyone acts differently I know, but you know what I tell everyone I meet . When I was diagnosed it panicked and stressed me out, and when walking I struggled to walk in a straight line . But as I am sure you know Stress only makes MS worse, so I have told everyone at work, people I socialise with, the absolute lot ! Being stress free helps no end, and I even use MS to my advantage, for example when it is my round in the pub, I dont have to move an inch, even though I am capable of walking .
At the moment your MS isn’t going to go away, but you know what I am utterly convinced that they will find a cure in our lifetime !!
Keep the hope and stay strong 
Hey Ant,
thanks for the msg, wow do you really, People are noticing that something is wrong but I think they think I’m half cut, I’m a private person I know I can’t hide it forever and will have to open up sooner rather than later, I’m not sure what’s actually stopping me I don’t like being talked about behind my back and probably coz that actually makes it all real, you sound very optimistic and strong. X x
Hi Emz I just found it easier to tell people . People can surprise you as well and really understand what you are going through . And if they don’t well they ain’t worth knowing . It sounds like you are worrying about it . Well take the worry out of it and tell people then at least it will stop people gossiping about you . It certainly made me feel better to the point that me and my friends have a laugh about it now ! I know MS is hard but why make it harder by worrying about it Keep smiling 
Ant x
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Hi all,
im new on here today, not diagnosed but had MRI and LP. I have less but LP was clear. My symptoms are wide and varied and I’m rubbing at relaying them but suffice to say, right sided, buzzing, numb, cognitive, fatigue and foot cramps to name a few.
im medically dismissed from the NHS and can truly say, I haven’t got a where all this is going. I hate to say it but I just want to know what it is.
Had Amytrip, Gabapentin now got pre gab and codeine.
the hot/sensitive patches still come and go, and I’ve had cold patches on R of my head. My speech feels slurry sometimes and walking/balance is sketchy.
i refuse to let it hold me down emotionally as I have children and husband but… There are times! I’m the sort that props others up and don’t want to be propped up.
sorry for the ramble, not sure why I vomitted it out. My Neuro is rubbish and retiring in July, I feel that things surface but never quite go away and this has been over 1.5 years.
Sorry again.
clare