Hello all,
Here’s the latest update from today.
After DX on 12 April (over 15 weeks ago) I have finally today seen my new neurologist, the one who has all the power to sign off the DMDs.
I’m sorry to say but I didn’t like him. He had not read any of my notes and even got my name wrong. He asked me to describe from the begining (4 years ago) what happened when, what was done, what tests I had, what the results were, symptoms etc. Not easy for a fuzzy ms brain…even now I keep thinking of things I forgot to say! Anyway he answered “well I’ve no reason to disbelieve you so I will authorise your MS nurse to start you on DMDs”. At least I got the result I wanted! He said if I have any issues I am to see my ms nurse or my GP and he’ll just see me to check in once a year (best keep notes for next years!)
So I’ve emailed my MS nurse to say we have the go ahead and she’s got holidays booked and no cover so will be hard pushed to see me until mid to end of September!
As ever it feels like two steps forward and one step back, what a tedious process but glad it’s moving in the right direction albeit slowly.
xxx
Well, I guess they don’t have to be nice as long as they do the right things??? (Nice is definitely a bonus though!)
One way to speed up the process is to just tell the MS nurse what DMD you want. You don’t need to meet for that - just phone or email her.
Check out the msdecisions website to learn about the DMDs: they don’t have all the data, but it’s a great source of objective info. Remember that there’s no “right” choice; just go with whatever one you think will suit you best.
Karen x
Hi Sarah- great news you’ve been accepted for dmds. Frustrating its going so slowly for you though. Quite common I find in the nhs. Have you decided which ones to go for? If not Perhaps you could use this delay to research. Again celebrate the news your going to get meds to fight this bloody disease. - well done. Congratulations Minxx
Hello all, I’ve already decided after MUCH reading and placed my order with my MS nurse. She gave me all the literature to read just after my dx. Going for manual injection rebif. Less site reactions with the manual as opposed rebismart thingy and it out performed my other short list on the clinical trials. very glad things are moving in the right direction. Sarah xxx
Hello all, I’ve already decided after MUCH reading and placed my order with my MS nurse. She gave me all the literature to read just after my dx. Going for manual injection rebif. Less site reactions with the manual as opposed rebismart thingy and it out performed my other short list on the clinical trials. very glad things are moving in the right direction. Sarah xxx
Hi I would go with what Rizzo said. I got a letter suggesting 2 different ones after I had tests for tysabri. I chose rebif 44 and my nurse has ordered, should be 2/3 weeks I hope? @Sarah I am having the rebi smart (fag packet size) as I have a memory like a sieve- I have been robbed of that as well as the gait and cognitive areas that have damage. In laymans terms dumber and slower. Ah well Hope it all goes ok for you Mike
Good morning Sarah - great you have made a decision. I am on 22 rebif. I use rebismart which is really nifty. I get injection site marks if I inject my legs. So I don’t. I just work my way round my stomach and lower back - no marks. Good luck Hugs Min xx
Hi there, I too have the decision to make of what drug to go on, I got all the info on friday, just trying to make sense of it all, I am leaning towards the once weekly Avonex injection. I think this will be better for me, I can try and schedule my shifts around it. I wont start treatment until the end of Aug as the clinic only does a starter day once a month. I will need to let the nurse know and take it from there.
hope you are well.
x
Hi If they wanted to give me anything stronger they could just IV Jack Daniels Mike
Gin and tonic for me. Not sure what they’d do with the lemon - the mind boggles Silliness does help sometimes Min xx
Lol at you 2!
Don’t you find alcohol makes all your symptoms worse?
I’ve not been able to drink for 2 years!!
Sxxx
Mo-Jo,
Make sure you read all the stuff on MS Decisions website too. There are videos of all the injections etc and is very informative!!
If you want someone to bounce ideas off I will give you a very unbiased response, just PM me xxx
Hi Sarah It didn’t make a difference to me as I was going to have tysabri first and made mind up to have before JC test results. Friends here shared their experience and helped. The neuro only game me a choice of 3. I couldn’t have tsarist as I hadn’t got worse. @ mo-jo I found friends here have helped top one Sarah Mike