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A sheepish hello...

scatteredscattered Posts: 326
edited 14. Nov 2014, 18:04 in Living with Arthritis archive
Hey everyone.

Sorry for not being around for such a long time. I started working full time, due to my RA being exceptionally well-behaved and all my online time disappeared.

Im coming crawling back now though, in the hope that you guys might be able to help shed some light on some recent goings-on.

My RA is still being really well-behaved. It's take a tocilizumab, MTX, hydroxchloroquine combo to get to this state, but (excluding all the damage caused while on other things) it works and I'm doing ok artritis-wise. However...

I've started falling. A lot. 4 serious falls in the last 6 weeks and every day I manage to either fall up or down the stairs, plus tripping on perfectly flat ground. I've considered bum-shuffling everywhere, but that's not the image they want to project at work. I've also lost feeling/ have altered sensation in various parts of my feet/legs. I keep walking into things and my limbs are all gloriously technicolour. My hand tremor has got worse and I thought I needed new glasses, but apparently that counts as blurred vision.

I've spoken to rheumatology and my GP. They are investigating and methinks a referral to neurology is on the cards. The RD is pondering stopping the wonderful tocilizumab - if he does I'll be most upset, the RA comes back with a vengeance when that happens - as it can very rarely kick-start neurological problems. Secretly, I'm a little bit scared.

So, when times get a little tougher, I return to the fold with my head bowed, begging forgiveness for leaving you all, and with a small plea: anyone else had similar stuff happen to them? Any advice?

Thanks, hugs and all that other good stuff.



  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    Hello Scattered, it is lovely to hear from you again albeit for all the wrong reasons. :( I am so sorry to read of your current troubles, what a bitter blow, yes? I don't know what to say or suggest because you are in better hands than mine but I hope some answers can be found and solutions discovered. I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicketstickywicket Posts: 25,998 ✭✭✭
    edited 30. Nov -1, 00:00
    Hello. It's lovely to see you again and I'm pleased your absence was for such excellent reasons. I'm afraid I won't be much help though. As I read your post I was thinking it sounded neurological. It seems your docs believe that too.

    Of course you're scared. We live much of our lives trying to banish fear – of the meds, of the disease, of what happens next. I hope you'll be able to stay on the tocilizumab but, whatever happens, we'll be here, OK?
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • salamandersalamander Posts: 2,028
    edited 30. Nov -1, 00:00
    Hi Scattered, I had to stop Enbrel due to neurological symtoms. Mine were parasthesia in various parts of my body. I was referred to a neurologist and had an MRI scan. Luckily, I was ok but am not allowed to take any more anti tnfs. It came back when I was on Leflunomide so that was stopped too. I was really worried for while and it is natural to be so. Hopefully, they can find out what the problem is and adjust your meds, if they are the cause.
  • As5567As5567 Posts: 665
    edited 30. Nov -1, 00:00
    Just wanted to wish you good luck with everything, it sounds like you're in good hands and things are being investigated, it's just the waiting game now.

    I know all too well what it's like to be taken off a medication, hopefully your rheumatologist will have some good advise for you and able to offer you something to help in the short term.
  • scatteredscattered Posts: 326
    edited 30. Nov -1, 00:00
    Thank you all for your kind replies.

    To be honest, I'm not sure which scares me more: the fact that I might have neurological problems, or the fact that I may have to come off the best drug I've ever taken for my RA.

    It's half-term from school this week and it's really highlighted just how much these symptoms have changed. When I'm at school I'm so busy I just sweep them all under the carpet, but I can't do that now. Hopefully, it will all turn out to be nothing and I'll be able to stop my bouncy ball impression :D

  • LignumVitaeLignumVitae Posts: 1,972
    edited 30. Nov -1, 00:00
    Oh Scattered (((()))) I just wanted to say hello and welcome you back (though I wish you didn't have to be here). Frightening indeed but we are here to offer you support. When my arthritis was out of control because the meth had to get back in my system after I'd been pregnant I made a habit of falling a lot (once dropping a baby in the process :oops: ). I don't think that helps but sometimes your propreception goes AWOL when your joints aren't right even if things feel right/ don't hurt/ aren't swollen.
    Hey little fighter, things will get brighter
  • barbara12barbara12 Posts: 20,942 ✭✭
    edited 30. Nov -1, 00:00
    Hello Scat and welcome back from me, like someone else has said Im so glad you were absent for such a good reason..but I can imagine how much this is worrying you...I just hope they can put you can put your mind at rest re the neuro..not sure how your back is but this could be coming from there..whatever the outcome I do wish you well and please let us know how you get on xx
  • scatteredscattered Posts: 326
    edited 30. Nov -1, 00:00
    After a traumatic two weeks back at work, I had a call from the GP on Tues. She had said she'd consult with my usual GP and decide on a plan of action. The plan: bloods and a review as soon as I can. The soonest I can do is the first week in December.

    In the meantime, I still keep meeting various objects and the floor at regular intervals. I wouldn't mind, only I think work have more accident forms with my name on than they do the rest of the staff combined! I'm developing a rather unwanted reputation between falling down and not being able to eat my dinner without spilling it down myself (shaky hands).

    Still, the arthritis is under control (very very quietly I might even say the words 'drug-induced clinical remission'), I'm loving life. All is ok with the world.
  • migmig Posts: 7,150
    edited 30. Nov -1, 00:00
    A very quietly whispered good. Mig
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    Hello again, Scattered, it's nice to hear from you once more but I am a little perturbed by the falling. Are your legs giving way or is your balance not so good? It is good that the arthritis is 'behaving' but . . . . . this is bothering me. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • scatteredscattered Posts: 326
    edited 30. Nov -1, 00:00
    Hi DD,
    It's a mixture between my balance being rubbish and my head thinking my feet are in one place when they are actually somewhere else entirely. It doesn't help that I can't feel them sometimes, so can't place them at all. When I'm stood still, sometimes I look down and see that I'm standing on my own toes, one foot on top of the other, but can't feel it so don't notice.

    The GP is on it. Testing my B12, Folate and HbA1C to see if they shed any light on the matter. I am worried, but things are so busy at work I don't have time to think about it which can only be a good thing.

    Being able to say all this to you all helps too - thank you!
  • NikkijamieNikkijamie Posts: 34
    edited 30. Nov -1, 00:00
    Sorry I can't help just want to say I hope things get sorted soon for you and good luck x
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