I have been diagnosed with RR ms 10 weeks ago. I haven’t started taking any medication but I will be starting tecfidera soo. Has anybody taken this? I am so scared about starting it as I am on the boarder line of low white blood cells.
Hi Tasher and welcome to the gang! Not a gang you would have chosen to join but you’re here now and really this is a great forum.
I haven’t heard to tecfidera. Normally for PPMS there are no treatments but recently a few new treatments have been put through trials so it’s possible it’s one of those.
Have you spoken to your GP or neurologist about the low white cell problem? They would be the people you should speak to.
Have you an MS nurse? It’s just the sort of thing a nurse will be able to check out for you, so if you’ve been given contact details for one, then either phone or email them and explain why you’re scared.
Hope you are doing well. Being newly diagnosed is a horrid place to be… head all over the place… imagining the worst… but you will have to trust me when I tell you IT WILL GET EASIER! It gets easier for everyone. It just takes time… so give yourself time and take it one day at a time.
Come on here and ask us anything!!! Bladder, bowels, sex, you name it, we talk about it… so ask questions. This is a lovely bunch of people and you will be made very welcome.
All the best,
Pat xx
Hi Trasher,
Welcome to the forum…I found it a godsend just knowing that there are lovely people on here that really really do understand in a way that, hard as they might try, our friends and family aren’t able to.
Take care of yourself,
Nina
tecfidera is a drug to reduce relapses we don’t get them with progressive ms i just heard people with RRMS taking this no drugs for PPMS at the moment, we just take drugs for sympthoms this drug won’t do anything for progressive ms.
Hello and welcome Tasher.
One thing we are good at is managing our conditions. I’ve had to make some significant life adjustments but I’m still going and giving as good as I’ve got.
After diagnosis, I carried on working for eighteen more years. I took Amantadine for fatigue but stopped.
This is the best place to come for advice and support.
Steve
Hi Tasha.
I don’t know anything about tecfidera as I’ve not heard of it before, so can’t help there.
Just wanted to say “Welcome” to you. I find everyone on here so kind and helpful.
Take Care …Buffy
hello Tasher, don’t be afraid of taking those. It can helped you of your condition and you are in the right dosage since it is prescribed with your doctor.
Tasher, if you have been prescribed Tecfidera, you don’t have PPMS, as there are no treatments for PPMS.
It will not help anyone with PPMS, as you do not have relapses if you have PPMS, and Tecfidera is only to stop relapses.
Hi sorry it is RRMS
Tasher said that he/she had been diagnosed with RR MS not PPMS.
Lots and lots of posts on the Everyday Living and Recently Diagnosed fora. Loads of great information and help on them. (I have RRMS but I always look on this forum because there are some great people and posts - no MS apartheid on this site! )
Hi Tasher
Welcome to the forum, lots of lovely people here, always willing to listen and offer advice when they can.
Newly diagnosed can be like a bereavement
going through different emotions, but eventually acceptance will happen, and it will get easier. Take one day at a time and be kind to yourself, hang in there we all understand.
Pam x
Who are you calling lovely Pat I am a rotten git
Xxx Don
Hi and welcome Tasher.
I am not really a rotten git but given the chance when my brother comes to visit tomorrow I would tie his shoe laces together and laugh like a drain when he falls over. Only trouble is I can’t get out of the wheelchair to do it.
Like everyone says it gets more bearable but I was diagnosed over twenty-five years ago and have only recently had to succumb to the wheelchair. Ask anything you like on here, like Pat says nothing is off limits we are all in the same boat.
XXX Don
You sound like my kind of rebel Don x
Pam x
Sorry, I can’t read (that’s metaphorically, not literally)
Quite, down with MS apartheid, we’ve all got the stinker, I have no problem with anyone posting anywhere whatever yucky version they have (or, as Scudger quite rightly points out, whatever yucky version the medics currently we have)
Jo x