Hi guys! I am 24 years old and been living with MS with 6 years now. It was a very tough journey being diagnosed at a such a young age - 19 years old. It took the doctors a whole year to give me a diagnosis.
Fortunately, I’ve had two Lemtrada treatments which have immensely stopped the progression of my MS. I still struggle everyday with symptoms but I have not had a relapse since my treatments in 2016/2017. This is my first time using the forum and I am not quite sure how to use it. But I would love to know how you guys are doing, what treatments you’ve had and how you manage your pain on a daily basis.
Hiya, this is a condition that should be like a pension, you must be over a certain age to get it, it should definitely NOT be the young, I hope you are still getting out and about and enjoying life, Brian
Hello Simran, welcome to the MS forum.
You’re amongst friends here. Some of us are much more seriously affected by the disease than others, but we are all fighting the same beast.
You ask about pain treatment: I take gabapentin three times daily for neuropathic pain - sudden sharp shooting pains that are very quick, and always a surprise, I get no warning. I jump, I shout, I curse and swear, which all help me feel a bit better, but it’s the gabapentin that does the trick. It reduces the frequency and intensity of these pains really rather well, I adjust the dose from time to time as needed.
I’m glad Lemtrada has helped you, I’ve not had that one. I was, for a while, on a DMD (Disease Modifying Drug) called Rebif which seemed to help, but I came off it a few years ago and have not had a major relapse since, so I consider that I’m doing OK.
Thank you so much and it’s so nice to find people that I can relate to.
Ohh that sounds so tough!! I hope you’re staying strong. It’s such a horrible disease and everyone’s experience with it is so different.
What dose of gabapentin do you use? Also, what are your thoughts on the side effects of the gabapentin? My body reacts really badly to the gaba pills if I’m on them for a long period of time. Usually, has a big toll on me mentally and affects my mental health badly.
However, my MS is pretty controlled I manage it with just co-codamols I have 4 in a day. And, sometimes when the pain is intolerable I have 300mg gabapentin once in a day.
I don’t think anyone deserves this disease! The unpredictability of this just messes with your heads so much. I’m struggling right now I’ve had a few flare ups but I’m assuming it’s weather related and it eventually get better for me. Hope you’re doing well too.
In answer to your question, I vary my dose of gabapentin between 3 x 500mg and 3 x 800mg daily - reducing or increasing the dose gradually, of course.
I don’t really feel any side-effects from this drug. The first treatment I was put on for neuro pain was amitriptyline, which I just could not tolerate, it made me feel heavy and cumbersome, and I was sleeping much more than I usually do (which is quite a lot).
All drugs produce side effects but some of us are much more sensitive to them than others; it’s just a case of trial and error… or ‘suck it and see’. The docs have quite an armoury of treatments at their disposal, so if you don’t get on with something discuss it with them - there’s usually an alternatve.
Hello @Simran how are you? I’m also a newbie here. Welcome to the community.
RRMS…since 2007, had no treatment since my MRI diagnosis. I was told meds do not work and can cause severe side effects…I have been under Walton Neuro in Liverpool.
All I was advised was to eat a lot of dairy - but since 2021 have stopped eating eggs and dairy…had a relapse in February 2022 - now numb below waist & left arm & hand.
Just getting on with things…don’t let things worry me…as long as I’m eating drinking and sleeping ok…I can do my job…
Hi @Simran Sorry that you have been diagnosed so young but pleased for you that it has been picked up and diagnosed relatively quickly. I am sure you will get lots of support from this forum. Just to be able to have others understand listen and share at the touch of a button is a great thing. Take care look forward to getting to know you.
Hi @Simran, welcome! I’m new here too.
Sorry to hear you received a diagnosis at such a young age. It’s good it’s been caught quickly though, so you have been able to get the treatment and support you need. I have RRMS (decently diagnosed), with active disease so I’m on disease modifying treatment and taking gabapentin 300mg 3x a day. That is making my feet and lower legs swell, so I need to reduce them. Medication side effects are different for everyone; starting any new meds is an experiment. I also take some other meds for chronic pain which were prescribed for fibromyalgia but maybe help my MS too.
Aside from medication, I’ve found some alternative therapies have really helped me such as cognitive behavioural therapy, mindfulness and meditation. It’s those practices that get me through my worst pain - when the drugs don’t work. Short guided meditations can also be reenergising. I need to re-start my practice!
I used to find sitting behind a desk for long hours each day would cause me a lot of pain and stiffness too and I switched to a standing desk with a decent standing mat and they have been a game-changer! So, it’s also important to consider your environment - is there anything that might be making your MS symptoms worse?