Last reply 8 months ago
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

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8 months ago

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

8 months ago

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

8 months ago

@fraction you’re dealing with such a lot at the moment it’s hardly surprising that you feel so bad. Can I ask a silly question, are you on any anti-depressants? My ms nurse reckons that anyone dealing with ms needs a bit of help just to get through a normal day. I’m on a very low dose, 10mg a day is the lowest but I have invested in a pill splitter and cut mine in half so I’m only on 5mg. Don’t worry about becoming addicted, you’ve got enough other problems to deal with. All the odd symptoms are normal, or as normal we can be given the disease we’re dealing with. I’ve had the beast for 25 years, and there wasn’t the choice and availability of DMT’s all those years ago. If ever this can be said in the nicest possible way, you’ve picked a good time to be diagnosed. You’ve gone straight on Tecfidera (I’m on this as well😜) I had 23 years of Avonex before, but when things started to change for the worst, they changed me to Tec and all seems to be going well. Now use an electric wheelchair and a mobility scooter, but only in the last 2 years was on my feet 24 hrs a day until then, so no worries about the future, you should be able to live a normal life. Don’t make ny decisions about work yet, enjoy Christmas and the New Year break, hints might take a while to settle down but they will in the end🥊😤😇😍

8 months ago

Hi @fraction. Hmmm, a teacher with a username of Fraction. Maths?

A quick question. Your MRIs in November ’17 and May ’18, were they just brain scans or brain and full spine? I’m just wondering whether these spinal cord lesions have been there since day one, as it’s an assumption that every MRI scans the full Central Nervous System (CNS).

So, the question is whether the present symptoms are residual damage from a previous relapse or new activity. That’s one for the Neuro. However, it’s what I refer to as “your body talking to you”. You’re doing something that the MS doesn’t like. It could be stress, diet, being over-tired, etc.. And, when your body talks, it’s best to listen to it and react accordingly.

Do create a list of your questions and concerns and tick them off as you go through them with the Neuro. It’s so easy to forget something.

Otherwise, useful information above from @vixen and @grandma. Yes, it would take the Tecfidera time to reach full efficacy. Yes, take this present school break as a chance to put your feet up. Let someone else manage any arrangements over this holiday period. And, yes, park this present problem in a box somewhere until you see the Neuro and you can put things into perspective. You do need some quality sleep. There may be some useful tips to assist here :-

We don’t want you to become an improper, or, heaven forbid, a vulgar fraction! Sorry, couldn’t help myself. 😉

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