Well, after having a dx by one Neurologist in June 2012, 3 days worth of steroid injections, numerous blood tests, urine tests, 3 MRI scans, undergoing torture (otherwise known as a Lumbar Puncture) and 6 months of living in Limboland I was given a confirmed dx 5 days before Christmas Day. I knew in myself what it was because the first Neurologist has said, but there was that tiny part of me that wanted the second Neurologist to say “actually we’ve made a mistake and it’s not MS”. One can dream I guess hahaha.
Anyway, I just thought I’d write to say this forum has really helped me while I was waiting for the final, confirmed dx. I consider myself to be extremely lucky as well - my dx has happened within 6 months and I am well aware there are some of you still waiting for some kind of confirmation so you can escape Limboland. I spent 6 months there and it’s not a great place to be in. I truly hope those still waiting get an answer soon.
So, what happens for me now? Well I have a care plan!! I work at a nursing home as a receptionist and I’m familiar with the residents care plans, however I never expected to have one for me!! Receiving this from my MS Nurse was the final “reality check” - ain’t no going back now!! My Nurse also left me with 2 DVD’s - one on Rebif and one of Betaferon … I need to watch them and make a decision which treatment I would like to go on when I see my Neurologist in a few weeks time. I’ve also got to have yet another brain MRI scan at the end of the month so I’ll get that out of the way and have a week away in the sunshine while the Neurologist is reviewing the scan (I think after the half year I’ve had I deserve a holiday now hahaha).
I’m feeling very positive and I have fantastic support from my parents (who are both retired) and two very good friends of mine (one of which qualifies as a nurse next month), as well as the Nursing Home where I work. Unfortunately I don’t have the same kind of support from my 21 year old daughter or my younger sister who both believe I’m “not that ill”. This reaction has been upsetting but I have to think that they have the issue and need to deal with it. This year I’m determined not to be brought down by negativity (I keep hearing “stress is not good for MS sufferers” in my head as it is). Hope that doesn’t sound too harsh but I need to get back to looking after myself a bit better after spending so many years making sure others are looked after.
Happy New Year to you all and hope 2013 is a brighter year
Glad you got an answer, albeit not exactly one that anyone would wish for. Don’t worry about your daughter or sister - you are spot on about it being their issue, not yours, and hopefully they’ll work through it in time.
I’m a bit curious about why the MS nurse only gave you videos for Rebif and Betaferon because you should be able to choose from Avonex and Copaxone too. Anyway, do check out the msdecisions website too - it’s a really good source of info.
Have a brilliant holiday and stick to that plan to start looking after yourself better!
Sorry you have joined the club that no one wants to be in. I was dx quickly and without fuss too, and I agree with you that this was a blessing. Things are as they are, and it is best to know so that you can start dealing with it. It is great that you have good support from some quarters. Sometimes people do not deal well with news like this about someone they love, and the urge to play down the seriousness in order to make themselves less uncomfortable can be strong. These people have to deal with their own issues: their problems are not yours. You are quite right to concentrate on your own feelings and concentrate on the task of coming to terms, or starting to. Alison x
Wow - thanks everyone for your kind comments , I had a meeting at work today with the General Manager who was very interested in how I was doing and kept emphasising for me not to over do it.
Karen: I went on the MS Decisions website and had a read through on all available treatments in the area where I live (Berkshire). I’m really not very good at injections at the best of times (you would think after everything I’ve been through to finally get a dx I’d be used to them) and after speaking with the MS Nurse about all the treatments available I ruled out Avonex (once a week but into the muscle - to me this would hurt and I would clearly see a needle ). Extavia is not used in the area where I live (the MS Nurse did explain why but I was pre-occupied by the whole injection thing so didn’t really listen hahaha). So the reason the MS Nurse left the two DVD’s for Rebif and Betaferon was after the conversation. Now I’ve had a chance to think a bit more about it I think I’m going to go the Rebif route rather than Betaferon because:
As it’s injected three times a week my thinking is (as I work part time too) I could inject on a Monday after work and have Tuesday to recover, Wednesday after work and have Thursday to recover and Friday after work and have the weekend to recover. Plus I’m hoping it comes in some kind of EpiPen dispenser (similar to what Diabetes Type 1 sufferers have who inject regularly) so I’ll be able to just stab myself and forget about it hahaha. As you know Betaferon is injected every other day which is not so appealing (if that’s a good word to use) as I don’t really want to have the flu symptoms etc while at work.
However the MS Nurse did explain that Copaxone is available in tablet form, although I have to try one of the injections for a year first before I can ask my Neurologist to be transferred on to it - so this will be my goal - to move away from injections altogether and take the tablet form - so much easier . The MS Nurse did say that if I didn’t get on with Copaxone though then I would be back on the Interferon injections (all the more reason to make sure it works for me after a year hahahaha).
Poll: I know - not really a good choice of word ‘lucky’ but I have to admit, compared to others on this forum I do consider myself to be ‘lucky’ to have had a quick dx. Absolutely right as well about mums shouldn’t get ill (we’re just allowed a cold aren’t we?) and I thought the whole daughter thing was just happening to me!!! I’m sure it’s because I don’t have limbs missing or confined to bed … I don’t feel so guilty putting myself first now hahaha.
Alison: Thank you - not the best club to be part of but at least it’s members are understanding and full of good ideas on how to stay upbeat and healthy.
Thanks again for your kind words - it’s good motivation to continue to stay positive
Pen - I have recently started on rebif and using the machine I have you never see the needle. I don’t have any terrible side effects, just take a couple of paracetamol before bed. So far I have been symptom free - so fingers crossed. The injections are not nearly as scary as I feared -I hope they work for you