Last reply 3 years ago
Another Newbie MSer

Not sure if this is the place to introduce myself, but here goes ….

I’m Tracy (obviously) 42 years young from near Basingstoke and I was diagnosed formally last November. For me diagnosis was a relief in a way, it was found as part of the investigation into chronic head pain, vision disruption and loss of balance, and loss of sensation in my left arm – they were looking for Brain Haemorrhage’s, Tumors and Multiple Strokes all of which are quite immediately life limiting so bizarrely MS for me is ‘the bright side’ (kinda ….) the LP’s showed I’d had meningitis which had caused a golf ball sized inflammation in my brain and while they were looking they found the lesions …. Quite a lot of them in my brain and my spine.
A major flare of the MS symptoms is in progress with the disease in a very active phase. The sensation loss in my skin now covers every bit of me except my right arm and parts of my back (which would be less of an arse if it was the other arm as I’m left handed) My neurologist is undecided at the moment between Beta Inteferon or Tecfidera as a treatment but having read up on them they seem quite hefty responses to MS I guess February 4th will bring some answers to which way to go when I see her again.
I’m having electrical acupuncture treatments and Ti-u-Na massage with cupping that I’ve arranged myself, and on the profoundly sensationless lower legs that’s showing some level of success I wouldn’t call it ‘feeling’ but there is a little sensation there that feels a little like a light tickle … anything’s better than nothing tough.
I’m lucky I have no pain but I do tire very easily with is something that’s been coming for a couple of years but now makes sense – it does give me a good reason for falling asleep on the sofa regularly though.
I hope I can contribute, learn and eventually when I know more than a grain of sand about this MS stuff be supporting of others.

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stumbler
3 years ago

You’re more than welcome, @tracyd . And that was a good introduction and a good place to put it.

The forum is a very informal place, so feel free to ask questions, provide answers, have a general chit-chat or just have a rant and get something of your chest. 😉


tabbycat
3 years ago

If you are worried about injections ask about gylinea. I have had no side effects at all after the fuss of taking the first dose and I am sure it has slowed things down.
Don’t be afraid of medication, the doctors will give you good advice and you can start to feel you are back in control again. Good luck and keep asking questions.


tracyd
3 years ago

@stumbler thanks for the welcome 🙂

@tabbycat
I’m not afraid of needles they don’t bother me at all, and I want treatment to start ASAP, what I’m concerned about having had a visit from the MS Nurse last week and all the information booklets left on Beta Inteferon and Tecfidera is that both describe ‘flushing’ as a side effect.

I’ve had IBS for over half my life, there’s not a day goes by that my insides don’t already go liquid at some point, the sensation loss courtesy of MS has now from just under my boobs to my toes. This seems to have dulled my ability to know when I’m going to need the bathroom so I now have 2 settings – ‘I’m Okay’ and the screaming claxon in my head saying ‘GO NOW’

The combined effect of that with either drug is going to messy, unpleasant and have a catastrophic effect on my life making it impossible for me to work or be more than a few steps from a bathroom.

Lemtrada from everything I’ve read would be more suitable, but I’m concerned because I’m newly diagnosed if I don’t agree to having these treatments first I won’t make the criteria for being allowed to be prescribed them.

I’m moaning, I’m having one of those days …. shutting up now 🙂


stumbler
3 years ago

@tracyd , you have every right to have a moan. Life has dealt most of us a bum hand!

There’s no harm in entering into dialogue with your MS Support team (MS Nurse and Neurologist) about your views on treatment and your concerns.

So, do keep talking to them and see if you can arrange a way forward that you are ll happy with. 😉


graham100
3 years ago

Hi @tracyd. If you travel abroad much then like me go for oral, injectables are a pain to take away. Keeping cool going through customs Etc. Lemtrada is the one I’m asking about soon. Want to get my nuroes opinion. Sure she will have one.

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