Panicking! Need advice! New lesions
Hi all,
I hope you've all been well!!! I really love this site and it’s the only place I know where I get a chance to speak to, hear from, or read about other MSers, so thank you first of all.
So as I've mentioned before. I'm a 24 year old, diagnosed in July with RRMS and was started on Tecfidera. Also a school teacher. So over the past few months (since the beginning of the school year in September) I’ve started to feel a little bit worse. I thought it was just because teaching is generally stressful for anyone. Nevertheless, developed slight double vision and nystagmus, then came the mild feeling of heaviness in my arms and legs, then came the huffing and puffing when climbing stairs (but still completely able to run up and down them multiple times a day) then came the excessive sleepiness – and this bottomless low mood that I’ve been unable to shake off for the past few months (I assumed both due to diagnosis as well as MS itself) and just generally a constant fatigue. I also noticed I developed tinging in my face, a slightly numb upper lip,right cheek area, a lot more tingling and pins and needles in arms and legs, as well as a constant feeling of burning in arms and legs. I feel like I’d best describe myself as a depressed and fatigued MSer at the moment, yet still highly functional and fully capable of completing all my school tasks and commitments outside of school etc.
Anyway- since I’ve noticed all this new stuff and since it’s all new to me, I’ve constantly wondered, ‘is it a relapse?’, so finally contacted MS nurse, who sent me for an emergency MRI the other day. I’ve not been given the full results yet, but I know some of them. Before I begin, I had my first ever MRI in November 2017 and had 4 brain lesions hence the diagnosis. I had a follow up MRI in May 2018 and there had been no changes. However, between then and now, I’ve apparently got spinal cord lesions, as well as multiple new brain lesions in various areas. My GP said neurologist wrote “significant lesion load burden” or something and I’ve been booked in for an ‘emergency’ appointment in January. It has really shocked me. It’s made me fearful of returning to school in the Spring Term, it’s made me wonder why it’s changed so much so quickly, if I’ve actually got secondary progressive? I haven’t a clue what’s going on and would really love to hear anyone’s opinion. Is it possible to have RRMS change so much in terms of MRI so quickly? I am nothing short of panicked!!!! Can’t even sleep.
Sorry about my essays – I’m a teacher, that’s my excuse!
Many thanks,
(an extremely worried) Fraction
By the way guys, I know stressing is going to do me no favours, but I really feel helpless at the moment. I will try my best to think positively and accept there is a lot only Neuro can answer - and also even more questions that no one can ever answer because of the unpredictable nature of MS. In theory, I know that no amount of stress or worry will change the future for me, but will only serve to rob me of my present day (and potentially add to my symptoms or lesions!), but in practice, it's much harder on days like today. So forgive me for asking so many things I objectively know you can't answer - I just want to find somebody who might've had a similar experience and talk me through theirs. Like I said, there is no one in my personal life with MS, so I do feel very alone in my experiences and fears. Many thanks, (a slightly more rational) Fraction
Hello @fraction. First of all, I think that the best data for efficacy of Tecfidera is based on measuring progression after 6 months and on, so it might not have had the full chance to get working yet. Not sure entirely, but I think that’s correct. Second, every teacher in the land struggles with the September onslaught, and you have the addition of everything linked to a diagnosis of MS. That’s one motherload to contend with! Me, and other people on here with RRMS have often talked about the misleading concept of RR when in actual fact it feels more like life is one big long relapse rather than dipping in and out. Not sure that any of this will help at all. But at least you know that others understand how you are feeling. I feel I am doing OK, but run up and down stairs like you? Only in my wildest dreams! Worrying won’t change what is or isn’t going on. So, with holidays on your doorstep, take a breath and enjoy the heavenly break from school and all the stresses. Be rested so you can hit the ground running and be ready for your appointment. Take care you x