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Intro - labels smables :)

I should probably have done this first as no doubt I’ve now convinced you I’ve got MPD :stuck_out_tongue: My name is Daisy and I have a

daughter Anne who types out messages for me when I get too tired or when I’m just typing complete and utter rubbish. She

should only type out what I ask her to but sometimes she gets carried away (yes, yes I do lol) You’ll probably be able to

differentiate between who’s writing but I will try to remember to sign the posts. I’m 45 years old, Have been deaf since

my teens and have a Cochlear Implant and have been diagnosed with Rheumatoid Arthritis for the past 10 years, our family

have a history of Autoimmune, I have siblings with RA, Osteo and Crohn’s. I used to work full time, part time when I was

bringing up my children. About 12 years ago I came off a motorbike, don’t ask what I was doing on the motorbike, and broke

my leg badly, I spent some time in hospital and then came out with a chair (was told I would always need a stick, more

likely crutches and occasional use of chair) and a walking frame. The break seemed to activate RA but I’ve got used to

that. I’m on pain relief and meds for the RA. Over the past year or so I’ve noticed a gradual decline in my ability to

form complete sentences, even my signing has been off, an increase in falls and indeed in dropping things. I went to my GP

about 10 months ago and was near enough told it was in my head, the pins and needles were because I wasn’t walking

straight and my incoherent speech and tiredness was stress related. In Dec we moved but I waited to transfer to a new Dr,

as soon as he saw me as part of the New Patient appointment he said he wanted to refer me to a neuro and he wasn’t

convinced that my gait and clumsiness were all related to the RA. so we wait for a referral to the hosp but as i said to

my daughter yesterday, I’m not sure what difference another diagnosis means if there isn’t a cure for it. I suppose I’ve

just hated labels since I was a child, “the deaf one”, since I was a new mother, “oh you’re the Kiellands” or now since

I’m “the batty one” :wink: Anne for Mum, Daisy

daisy, you have more than your fair share of ailments!

aren’t you curious to hear what a neuro thinks?

RA is nasty, my aunt has it

my sister has psoriasis (another auto immune thing)

me and my other aunt got ms

carole (another batty one)

x

The useful thing about the MS label (and I really sympathise with your hatred of them in general) is that once you’ve got it, it opens up a whole world of drugs and treatments. For example, I have just started on Modafinil. This is a wonder drug for brain fuzz. The neuros will only prescribe it for excessive sleeping but it actually makes your brain work in the way it used to before MS - imagine!

There are plenty of people with MS (and other things that cause their bodies to function less than optimally) who prefer to stay drug free. That’s absolutely fine and right for them if they believe it is right. I personally will try any drug or treatment that might make my life easier (except the dangerous ones with no evidence behind them). I know I’m possibly trading better time now for some horrible events in the future (how do all these drugs I’m taking react together? what are the effects of any of them singly in the long term? no- one knows). I might be having a better time now and be better in ten years time than I would have been without any of the drugs.

There you go, there is my MS label and MS drug manifesto. All are welcome to disagree with it.

Hey Carole, Don’t know, just feel like if I’m gonna be looked at like its all in my head again then why bother? Technically I suppose it is all in my head lol, (and possibly spine…) maybe having an umbrella to put all this under, the twitches, the loss of balance, the being drunk without touching a drop… the going into a shop and standing there like a stunned rabbit completley unable to recall what I went in for… the not being able to recall the name of an everyday object, having to have my daughter organise my meds so I take them or G-d forbid take a double dose, meeting somebody in the street, talking to them and as we walk away my daughter saying to me “you have no idea who that was do you Mum?” Anne for Mum x