Hello everyone! I’m 22 and I’m newly diagnosed with ms, relapsing remitting. The process was pretty quick. I was diagnosed after one episode of optic neuritis. My brain MRI showed different lesions, after the lumbar puncture everything was confirmed. I don’t have many lesions (like 9- one small in my optic nerve, one big one in my head, five smaller ones and two very small). Sorry for the silly questions but I’m still trying to understand the condition I was diagnosed with and I still don’t feel like asking my neurologist because it would make everything real. He was very kind and told me if I had questions I could contact him but for now I don’t feel like it. I’m trying to accept this diagnosis for the moment. Anyhow… My questions are: - After going through steroids I remember spending this nightmare week where my levels of fatigue were the lowest anyone could experience really! It was so crazy I needed 5/6 hours nap after cutting some vegetables for lunch (and I was sitting down). I really felt so heavy I couldn’t lift an arm. I’ve always thought it was the steroids but once I’ve talked to this girl she said that’s ms for sure. Could it be possible? That feeling went away after one week. I’m still not sure what caused it. - Is it possible that I feel more tired than normal? Could it be the medication (I’m on tecfidera) or ms? I mean I’ve noticed my energy levels are lower than normal. I can still function but I suffer more with heat and I’m general I need to rest more. Or like my leg muscles are weaker somehow, they easily hurt when I make more effort. Is this normal? - I’ve done an MRI 6 months after the first one and there are no new lesions (even though I wasn’t on medication). Does this mean my Ms isn’t aggressive and I can consider stopping medication? - this one I feel very silly asking but I’m trying anyhow. I have frequent migraines and sometimes I forget words. Everyday words. I feel so stupid about it. Especially when I’m tired.Could it be ms or I’m thinking too much? Sorry for all the questions but I’m just trying to understand my body and this condition more. I know ms is different for everyone but some symptoms are really common so if someone who knows more about it could share some info I would be extremely grateful!
Hi there
Am waiting to begin process of assessment but done lots of reading though absolutely not any way shape or form an authority. I think the only authority on your MS is you likely
However I think fatigue would be a very unlikely side effect of steroids as they are super boosters and if anything its the opposite. However, i do think crippling fatigue is a symptom of MS and side effects of drugs would be easy to check in respect of seeing this.
I think no new lesions is of course good, but the lesions you have can cause the problems irrespective of this I think but am not sure what they define as active (other than maybe being symptomatic or in relapse?)
. Am not sure about stopping meds either but dont think they are purely about symptom management but are disease modifying and to cut down relapse and progression. So earlier on them the better, and if figures remaining on them if able to tolerate them is sensible
Re the migraines, research shows that they are very prevalent in those with MS, but also not
My migraine activity is heinous just now but until i see neuro, no appetite to look into if further , in event of course its neurologic and not migraine. Forgetting words i think is common as they have lots of symptoms that are quite neurologic but if so i woudl expect that to go when the migraine goes so suppose if it continues, it might just be some cognitive impact of the MS
Hi, sorry to hear you’ve found yourself in this position.
Fatigue is definitely a big symptom of many people with MS - I’d mention how it came and went at your next appointment and see what they have to say. If it happened right after your diagnosis then maybe it was just exhaustion after going through the diagnosis and having to get your head around it all. On the other hand symptoms that come on suddenly can be suggestive of new MS activity so it’s always worth letting them know and then they can advise and hopefully reassure you.
From what I understand cognitive decline is more likely to occur gradually over the years so it would be unusual for you to have noticed it already. How is it when you’re not having a migraine? Hopefully it’s linked to that and is just a migraine symptom that will come and go with the headaches.
In terms of DMDs there are many options so if your current one isn’t suiting you then you should have the opportunity to swap. They will almost certainly want to keep you on one of them though as the benefits are significant. There can also be a bit of a rebound effect if they’re stopped suddenly so you would need a plan for how to come off it safely.
Hope some of that is helpful. Well done for getting through the first few months. The longer you go the more I’m sure you’ll get to know your own body and what’s ms related and what isn’t. Sounds like you’re doing really well so far. Xxx
You’ve written a brilliant answer. Clearly you’ve been reading and paying attention.
Sue
Fatigue is indeed one of the most common symptoms of MS. Have a look at https://www.mstrust.org.uk/a-z/fatigue The MS Trust is a great place to look for answers about MS. If you type the word you want info on into your browser and the words MS Trust, you can get a whole load of fact sheets. Or, look at the tab at the top of this page labelled ‘About MS’.
Sue
And so have you.
Sue
Thanks Sue, think I’m gradually getting my head around all this new info!
I have just been diagnosed with MS. My first indication of an issue was when i had an episode of Optic Neuritis. Might I ask if you had steroids to treat that or if people would recommend it… i don’t know if it is even an option but i was told to just wait and it would go. I have found now that my vision is has been slightly impaired. Have others found that also to be the case for them?
Also I have the same issue in not being able to remember words… As you say - silly things - mine was doormat… (amongst others) i was told that it is probably not related to the MS but i am not so sure… At the moment all i ask my partner to do is not but in and tell me. I want to be able to remember myself… It is just not knowing if it could be related that i find confusing…
Hi Helen, I wasn’t offered steroids for optic neuritis either. I was told it doesn’t change the final outcome it knly speeds up the process. Once I “recovered” from the episode the ophthalmologist that treated me said its hard not prescribing steroids, especially when the recovery is taking so long (mine took months to get better, I was terrified I would never get my sight back to normal) but ultimately it wouldn’t change where my sight recovered to. My sight is nearly back to where it was before the optic neuritis, not quite, but almost. Although I know this doesn’t always happen. I’ll also add I have not been diagnosed with MS, but am under investigation for it. Currently awaiting a lumbar puncture, after having had 2 MRIs and 2 episodes of optoc neuritis (the second one happened in lockdown). I’ve been waiting for the lumbar puncture for a long time now. I’m really hoping I’ll get an appointment soon. I have an appointment with the neurologist end of September, it will be my second time seeing him. Sorry I got off track in this message…
Thank you. I have only had one episode so far. I now see colours differently out of each eye… very bizarre. I am relieved to hear in some ways that it taking months is not unusual as mine has been ongoing since may. I have also been worried that I wont get my vision back. I am looking at it as I would be content if this is the best that i get back considering how bad it became at its worst.
I have just had the results of my LP and it took a while to get them but now I know and its been confirmed its a relief in some ways that I am not left wondering.
Nothing wrong with getting off track… I am finding it difficult to get used to it / getting accustomed to it…
I hope you get your LP soon. I was nervous to have it but it was nowhere near as bad as i had imagined. Found it a little weird afterwards in that had motion sickness and i normally never suffer from it at all…
At the moment i am learning something new every day about it…
I do love these forums for support, they have made me feel so much like I am not alone. I was terrified I would never get my sight back when it first happened. It was like I was in mourning for my eye sight! It must be a relief to get some answers, even though the answers are difficult to hear. I find the not knowing the difficult part, but I know it is going to take time. I’m such a planner, I plan everything! (I’m a teacher, I think it’s in our blood!) With answers I can be practical and do something - with uncertainty I don’t know what to do or how to deal with it, but I’m learning slowly.
I’m still waiting for the LP, but I have a phone consultation with the neurologist on the 30th September. So hopefully will know more then.
What are your next steps, if you don’t mind me asking?
At the moment I have been told that I just have to wait and see. As I have only had one episode so far they thought that going on treatment might not be a good idea just yet. If I get any other episodes then I have to contact them and then we will look at treatments. I have a follow up MRI next appointment in July but that seems a world away.
I am also just having phone consultations which I don’t mind but the consultant felt a little concerned that this might not offer enough support with a new diagnosis.
I think that I am ok but I am finding that I talk about it frequently to my partner and other at the moment and I am finding that my friends are unsure how to deal with it and keep asking if I am ok… I don’t think i am ready to join support groups yet but that would be the next step along with trying to make healthier lifestyle choices… Nothing like a swift kick to prompt a healthy change…