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Newbie!

Hi all.

I’ve been haunting this forum over the last few days - not least because I’ve been an inpatient whilst I’m pumped full of IV steroids, had loads of blood tests and neurophysiotherapy.

I just wanted to say what a great community I think this is - I’ve certainly felt less alone as I embark on this treatment journey. Its all been a bit weird - I had double vision 3 years ago, but they were looking for things like myasthenia gravis and it self-resolved, no MRI done. Then early in the summer this year, I started to lose my sigh (thankfully not totally!). For months, I had been absolutely shattered… And then lots of other things started to kick in - pain, pins and needles in strange places, shocking memory and understanding problems… And did I mention I was so, so, so tired, lol?!

My Neuro (an MS specialist) is fantastic, is being so thorough and consultative - I feel like I have a say in my treatment.

Anyway, that’s me. This is all very new and it still doesn’t feel real - its like I am writing about somebody else! I’m om pregabalin for nerve pain which is helping a bit, but I do feel like I’m floating around on a fluffy cloud at the moment…

Looking forward to getting to know you all x

Welcome - sorry you’ve joined us, but welcome! I’m glad to hear you’ve got a good neuro - have you been put in touch with your local MS nurse yet?

Do you mind if I join you on your fluffy cloud? It sounds like a lovely place to escape from reality for a little while!

Hi Mitzi

Thank you for the welcome! Yes, plenty of room on my cloud - it also lowers and raises itself so you don’t have to climb a ladder to get on :wink:

I’m lucky enough to be working from home this week - I dragged myself into the office and my boss (in the nicest way) wanted to know why I had made the journey, bless him. The steroids after effects have been a shocker - my face, head, neck shoulders and chest felt like I’d been pummelled - so tender! That’s gone now, but I don’t seem to have benefited from the treatment - yet. I would cross my fingers if I could!

Like I said in my intro, this all still feels weird, and every morning I wake up thinking it’ll all be gone - and then I realise it’s not. Very weird time…

I hope you’re doing well.

Take care -

MonkeyGirl

I’m sorry for the delay in responding - I spent the weekend at my parents’ house and I can’t access this site properly away from home. I had a lovely time, not doing anything in particular but I got to see some of their holiday photos and just generally catch up on what they’ve been up to (they’re retired and they frequently say that they don’t know how they ever had time to go to work!).

I too am a newbie. Got told today by Dr Good looking. I have had strange seizures that initially was diagnosed as anxiety attacks and gp put me on antidepressants. Finally after a day where I had more than 5 before I left for college my mum took me to the nearest hospital and got transferred to critical assessment at a different hospital. Eventually I was referred to a neurologist at another different hospital. I can officially say I have had all scans: eeg ecg xray mri. I went into hospital at the end of June/early July. Got tests taken for cadasil, lumbar puncture etc. I’ve been in limbo since then until now. I was terrified for cadasil, it meant I could have a stroke before 40 and my family could have it too, it’s scary. Today, as I walked into the hospital, I felt more alone than ever, scared and vulnerable. My family were around me, though, and tried lifting my mood. When we were in the waiting area I couldn’t sit still, I needed to walk, felt like cleaning to help take my mind off it. Mum came in with me as he told me it was a clinical diagnosis as I have 2 symptoms of it and no other causation of the lesions on my brain. We saw the scans and my brain is riddled with lots of small white spots, with some in my temporal region, which would be causing my seizures. But, it’s not cadasil, and I can actually see the good side. I know what I have (ish) I can laugh about forgetting things I have people that walk beside me I can cry and feel weak and still get up strong. I am 19, and put lazy, unenthusiastic people to shame, going to be a nurse.

Sorry to see that you’ve joined us, Normal Girl, but welcome. We’ll be here for you through the good and the bad but with your positive attitude, you go get 'em - you can take on the world! Good luck with your studies.