Hey everyone. I was recently diagnosed after doing certain tests about a weird thing happened few months ago. I could not see well from my eye: doctors said it was a nerve inflammation. I’ve recovered pretty quickly from it. It was scary and annoying but I’ve been fine ever since. They found like 5 lesions on my brain and antibodies with the spinal tap exam so I was diagnosed. I’m 24 by the way. Neurologists decided to have me start on tecfidera few weeks ago. He said that judging from my brain MRI I have little to none brain damage and he thinks I won’t have any neurological symptoms for at least a decade. I feel absolutely okay, my eye completely healed. My concern is: Why should I even bother taking medication if my ms is so light? If its gonna activate in a lot of years why should I even worry and why even was I diagnosed?
I’ve read about people going through a lot before the actual diagnosis. Thats so crazy to me. Most of the times (besides when I have to take the pill) I don’t realize I’m chronically sick. I guess I’m just baffled… I mean I’m lucky for sure I’m not here complaining that I am okay, just… things feel very weird and I guess I haven’t understood how this disease quite works
Hi Anon, your journey thus far has been almost identical to mine, right down to the Optic Neuritis and the ‘could’ be a decade before it darkens your door again quote. You have been diagnosed with RRMS, if it makes you feel better, look at the Tecfidera as preventative maintenance, an investment in your future. Don’t let it rule your life but give your condition the respect it’s due. Just my 0.2c Retro.
I can imagine I would have had similar thoughts if I’d been diagnosed soon after my first episode. But the evidence in your case is concrete and taking the drugs now will give you the best chances in terms of disease progression in the long term. Think of it as prevention is better than cure.
I can understand your doctors/nurses wanting to reassure you and be positive, but I do also feel it’s their duty to make sure you understand why they have put you on this drug and why it is so important. Don’t be afraid to ask them.
Good luck with getting your head around it all. The great thing is (aside from lack of clear explanations) it sounds like you are getting excellent care xx
I hope it’s ok to post, I don’t yet have a diagnosis. Last summer I started having problems with my eye, a halo type effect and sometimes blurred vision. This lead to 2 MRIs and I have lesions on my brain and spine. I have been told by my doctors it could well be MS. Got another MRI and lumbar puncture over the next 2 months. I’m getting some ache, pains and tingling at times and struggling to sleep and wondered if anyone had any advice or tips? Thank you!
Good morning Sarah. You’d probably have been better posting your question in a thread of its own for more responses. The positive news is that a Lumber Puncture should confirm whether or not you have MS. Sometimes, a diagnosis can be a relief, everyone’s journey is different. I’m no medial expert but I imagine your symptoms could also be something else entirely. So although it will be hard try not to worry too much or get ahead of yourself with what might be. This is a great forum so if fate decides to bring you into our exclusive club, it’s a good place for information. Stay safe. Retro. x
Hi, yeh it does sound impossible to have MS with no symptoms or feeling ill.
But enjoy the good feelings and maybe if you want to try life without the meds, then do so.
But you may not feel so well as you do…
Hey there. Yeah I consider our case very lucky, but also I have heard people having optic neuritis as the presenting symptom, not going through any treatment or medication and then having a severe relapse (like walking issues, weird sensations, trouble with balance… all those things). It could be we are fine for a couple of years without medication then get a severe relapse, it could be that we would get a mild relapse now and then, it could be we don’t have another clinical episode. Nobody knows! It’s so frustrating really. I’m just frustrated ahah, even though grateful that I’m okay now
Well I’ve changed neurologist. The one who diagnosed me is not the same I started treatment with. The first one told me all I needed to know: that I could get a relapse in a month or a decade (nobody knows), that if I start treatment I won’t have a future severe disability…
The second one (I decided to go to him because he’s one of the best in my country) I guess tried to reassure me because I was a bit scared and worried. But since he is so prepared I don’t think he would lie to a patient (hopefully??). He told me not to worry because I’m healthier than him and that my brain MRI is wonderful as I don’t have lesions on my spine.
I don’t ever want to have a relapse because it was scary and steroids were soooo bad but at the same time it’s hard to remember that I’m sick without feeling so! I’m just becoming paranoid because I’m waiting for my body to deteriorate ahah! Like I’ve noticed that my muscles easily tire out. My legs still hurt after a 3 mile run from two days ago. Is this ms or my mind? I sometimes wish I wasnt diagnosed because now I’m paying a lot of unnecessary attention to my body
I think next time I’ll ask him.
well from what I know if you have lesions the chances is ms are high. If yout sensations continue in the same area for more than 24 hours (without ever stopping) you need to call your neurologist because it could be a relapse! Likely you are gonna do an MRI after and if they find new lesions you are gonna be diagnosed without the need for you to do the lumbar puncture. SO my advice is to talk to your neurologist about it
Yeah this is also something that scares me. What if I get sick if I’m not on medications? I don’t want to play a game of chances with my health but I sometimes wonder “What it would be like without medications?”
I was hoping they would help me in terms of fatigue and give me a boost of energy but that didn’t happen. I just have side effects lol
My view on this is of course it is perfectly possible to be symptom free between relapses and lead a seemingly normal life. Now I am 20 years and more down the line and I think they are going to tell me progressive MS (I just think this is a missed diagnosis). The point is I have been told no treatment is available! So I wish I had been diagnosed earlier with a possibility of of minimising eventual disability!