Hi hope you don’t mind me posting on here as I’m currently un diagnosed with anything. Got my monthly cycle this week and my symptoms are playing me up. Mainly sensory but a few leg spasms thrown in as well. Not being diagnosed and having been to a neuro who wasn’t the kindest, I have taken to doing a bit of my own research. Obviously I worry that if I did get a diagnosis of ms, what type it would be I know currently there is no treatment to stop the progression of ppms but I have been reading that gileyna is currently under trial in the uk for ppms and that the trials will end in September of this year. Wondered if any of you know how this is going etc? As there’s no info as to how the trial is going. This is all out of curiosity. At present I’ve nobody to ask questions to as I’m in the process of waiting for a second opinion so thought I would ask on here. Thanks Jo x
hi Jo and welcome! Well of course you are worried but you are really jumping the gun…this isn’t a criticism, it’s normal when you’re worried, but you are a long way off being diagnosed with MS…and even further off from knowing what type it might be. There are literally hundreds of conditions that cause symptoms similar to MS and actually the chances are much higher that you have one of those conditions…many of those are easily treated. I was diagnosed 6 years ago and I’ve no idea what gileyna is…it rings a bell…but I don’t see the point in knowing until it’s been through trials…and that can take ages…often years! So deep breath Jo…you might be at the beginning of a long journey. On the other hand you might get diagnosed with something else altogether. So take it one day at a time…and as you’ve already been reading about trials I’m assuming you’ve been googling? Very bad idea hon. Dr Google is the most unreliable doctor in the world! Take care and really hope you get some answers soon. Pat xx
Hi Jo
I am in the same opinion as Pat, and unfortunately it is a journey that does ttake time, so no point worrying about somethhing that may not happen, that just wastes precious energy.
As for treatments that are still on trial, even if approved it can still take a long time to filter into the system. Your best bet at the moment, is to see what medication you can have to alleviate the symptoms you are experiencing.
Take care
Pam x
Hi pat and Pam thanks for the advice. I will read these comments when I’m having a bad day to remind myself that I haven’t even been diagnosed with anything yet. My problem is when I start getting symptoms I start worrying about my kids and that I’ve got to be here for them. Today has been one of those days. I’d just been looking up treatments currently under trial for ppms and read up on the drug I mentioned. Guess I should try not to think about it unless I have to thanks again xx
Hi Jo
I really do appreciate how worrying it can be, and how easy it is for your mind to go into over drive, but honestly it is best not to go on dr google, there are an awful lot of conditions that mimic ms, easily treatable conditions.
If you are having symptoms that cause problems for you, please speak to your gp, as there are medications that can help.
Take one day at a time Jo, and if it does turn out to be ms, please do not think that life is overl honestly it wont be, life is still good.
Pam x
Thanks Pam, I am on some treatment and as I’m having a bad week this week I had upped my gabapentin then only realised today they had given me the 100 mg tablets instead of my normal 300 mg, probably why I have felt so bad. Thanks for the advice again, reading posts on here whilst I have been in limbo has made me see that life goes on and like you say it may not even turn out to be ms Jo x
Pam’s so right… life isn’t over with MS… And Jo remember… IF you do have MS, you’ll still be there for your kids. It’s not a terminal illness…loads of people with MS raise children. Try not to worry. Whatever it is that’s causing the problems, it’s bound to be made worse by stress. Everything is. Take care, and feel free to come back here to post if you have more concerns. Pat xx
Thanks very much pat. Your comments have made me feel much better, appreciate it very much x
Hi Jo dont worry coz worrying never changed anything I am 20 odd years after diagnosis and its been and still is a battle every one of us has our own tale to tell and second guessing stuff you may or may not have helps no one its ever so easy for me to say wait, we all want to be in control but calm down deep breath and exhale now wait and see what the docs say then put stuff in place to make your life easier. I have had to retrench so many times over 20 years but I have laughed all the way and still do now. GOOD LUCK with whatever it is KEEP SMILING.
Thanks happity, wow 20 years seems a life time. It’s really hard not second guessing when you are in limbo but hopefully it will all piece together in the end. Trying hard not to second guess whilst I don’t know, keeping myself occupied is the best thing to do, Thanks for your advice x