I’ve posted here a couple of times since I was referred to neurology in June & always found kind advice & comfort here. Well after some lesions on my MRI I was sent for an LP & yesterday my neuro diagnosed RRMS. I kind of knew it was coming but I had still hoped that the LP would be negative & maybe that would mean it was still very early signs or something.
I’m being referred to an MS nurse who will give me more details about DMTs, I’m so baffled by all the options, side effects & risks. I feel so down & exhausted by it all.
I also suffer with anxiety & depression that I’ve had under control the past few years with medication & self help so I’m doing everything I can to not dwell on what might be but damn it’s hard!
Anyway, I wanted to share as some say that it can help so thank you for reading.
Hi Chaz, I sounds to me as if you’re more concerned about the diagnosis of RRMS than the effect it’s having on you. However you are now in a position to tackle the day-to-day issues which you weren’t able to when you were in limbo. Your MS Nurse could be your new Best Friend. He/she has all the information at their fingertips to help you deal with any issues if or when they occur. They can guide you through the DMTs and refer you to other specialists, such as physiotherapy as and when you need them. So you’re not alone. Let the MS Nurse, your GP take the strain. And when you have a question or just need to let off steam you have this Forum. The combined experience and wisdom of people who come on here is phenomenal. Together, we have more familiarity of the daily problems that MS brings than any neurologist, and we have a lot of answers too. Best wishes, Anthony
OMG, after all the conversations we’ve had over the past few months. It sounded so definitely like the neurologist was convinced it wasn’t MS. So incredibly, the neuro was wrong, we were wrong to advise you to look at your anxiety and try to put MS out of your head, and you were right to expect a diagnosis of MS. I’m sorry that over the past weeks, I’ve put your (admittedly unusual) symptoms down to anxiety.
In some ways, can you feel at all relieved that your symptoms do finally have a physical basis? An MS diagnosis sometimes can seem to be a relief rather than something to add to your worries and concerns. I understand if it’s not a relief, if it’s just making you feel worse.
In terms of the disease modifying drug decision, I can see that it’s causing you even more concern. Have a look at MS Decisions aid | MS Trust This has all the available DMDs depending on how ‘active’ your MS is seen as being. You won’t get a complete free hand as to which drug choice you have, it’s likely that you’ll be offered one of a short list.
Yes, all the DMDs do have the potential for side effects. The idea is that you weight up the potential costs (side effects) against the benefits (possible relapse reduction rate). So the highest possible relapse reduction rate often comes with the greater chance of side effects. But some actually might have the risk of initial side effects but which improve relatively quickly (as Carole found with Tecfidera).
Just as Anthony said, you’ll find your MS nurse is worth his or her weight in fine cheese, see what options you are being given, and talk them through.
I am sorry you finally had the diagnosis you were so anxious about. Carry on talking to us here, we’ll be happy to help out with your future concerns and questions.
Thank you all for the advice and support. I’ll take it all on board! I think my user name is very similar to another’s, think she is “chezanxious” or something like that (very confusing on a forum sorry about that) - I think this may be who you’re thinking of Sue as I don’t recall you putting my symptoms down to my anxiety. I’ve just received the copy of the neuro’s letter to my GP confirming the diagnosis, it was hard to see it in black and white but I am ok. The hardest thing is trying not to worry about the future especially with my kids (9 and 3), hubby and job that could all be affected, or will be affected by my relapses, symptoms or drug side effects. Anyway, thank you again, I feel less lonely having here to come to for info and advice. Chaz
I can’t believe I hadn’t realised there was chezanxious who clearly didn’t have MS plus you, AnxiousChaz, who does.
It’s been utterly confusing, when we posted to you previously, it was clear that you were anticipating the MS diagnosis, with very good reason, meanwhile the other person though he had Lhermitte’s sign, but didn’t (and other symptoms that just didn’t really fit), while you actually did have it. And in fact the other person is a) male and b) a lot younger (I’ve just found his thread and he is aged 19!)
I’m so sorry I’ve had you confused. (I suspect Carole may have done as well, given that her post started with ‘well you were right all along’)
I will not make that mistake again.
As if it wasn’t hard enough, to have us confusing you with someone completely different!!
You are right to worry about the future, but then the future is unknown for everyone. It may be difficult if you have side effects from a DMD, but with luck, a good DMD that suits you and your lifestyle, and the reduced number of relapses should minimise the effects on your family and your work.
Keep talking to us here, we’ll do our utmost to help you over the next few months while you acclimatise to the diagnosis, decide on a DMD and get started on it.
hi chaz it was very confusing with the two user names being so similar. actually i still think of chez from time to time and hope he has got help with his anxiety, as sue says keep coming on here and we will be here for you. xx