Early onset MS experiences
Hi, I'm not diagnosed with anything but I'm seeing a neurologist soon and I'm planning on asking about MS. I'm trying to educate myself on MS before I go in because I'm young and used to not being taken seriously about my symptoms (aren't we all?)
Recently my symptoms have gotten disabling but I've had a number of things which have affected me since I was pretty young, before 10-13. I was wondering if this was something anyone else has experienced? There aren't a lot of studies on it right now
Some of my early symptoms are:
- visual disability (double vision, confirmed to be neurological by eye specialists. I wear prisms)
- vertigo (worse when laying down or tired, it used to be mild)
- fatigue/brain fog (I have mental health issues which affect this)
- pain in back/shoulders/skin
I also used to have severe restless legs and insomnia, but I don't know if that's related to this. I'd also had a head injury when I was young so I'm still not sure if it's something else (doctors have brought up a few things). Still MS seems to fit the mystery illness that affects all the women in my family and myself
Thanks!
I'm really glad you reached out to ask about all of this. While we wait for others to chime in with their experiences, I wanted to ask you first, how are you feeling about your symptoms, the things you've read, and your appointment? You're in good company here - I think a lot of people can relate to your words about taking the steps to try and find some answers, and I hope others chime in with their experiences to offer some guidance and connection there. While we aren't medical professionals here, we can provide you with support and information on what you're asking about. Many people in the community experience what you mentioned with optic neuritis (many in the community mention this being their first remembered symptom of MS), vertigo, cognitive dysfunction, and pain, which can for many, translate to painsomnia or insomnia due to experiencing pain, unfortunately. It's great that you're seeing a neuro to discuss all of this because MS can also be called the great mimic, in the sense that it presents so differently for so many people that often doctors will try and rule out a bunch of things before coming to the conclusion of MS. I'll leave a few articles below touching on those specifically for you to read up on. You can also feel free to utilize our search function on the site to search for more examples of any symptoms you're experiencing, as well as more experiential examples to share with your doctor if needed.
Optic neuritis - "Poor Vision: What is Optic Neuritis?" written by our author Matt is a great article because he discusses what it is, his experience with it, and how he has managed it. - https://multiplesclerosis.net/living-with-ms/poor-vision-what-is-optic-neuritis
Vertigo - "Dizziness and Vertigo" this is a more clinical article reviewed by our medical board that discusses what this is, why it happens with MS, and how it can be treated. - https://multiplesclerosis.net/symptoms/dizziness-vertigo
Cog fog - "What Causes Cognitive Dysfunction?" is written by a former writer for us and a registered nurse living with MS. Stephanie discusses what cog fog is, how it relates to MS and other possible causes. - https://multiplesclerosis.net/living-with-ms/causes-cognitive-dysfunction
Pain - "MS Symptom: Pain" again, this is a more clinical piece reviewed by our medical board but I'm including it because it talks about the different types of pain and how they can be described which can be helpful language to have when talking to the doctor. Being as specific as possible is always a good thing. - https://multiplesclerosis.net/symptoms/pain-chronic-pain
Receiving Diagnosis - "Diagnosis" this is another clinical piece that I'm including because I'm sure you've read about it already (you seem like a very well read person), it's always a good thing to have an idea of what to expect when you see your neuro. -https://multiplesclerosis.net/diagnosis. I'm also including an article here written by Mike, an author of ours living with MS about his perspective on what to expect when seeing the neuro and what he wishes he would have known - "If I Knew Then What I Know Now - Neurologist Visit Considerations" - https://multiplesclerosis.net/living-with-ms/how-prepare-neurologist
I know this is a lot of information and I hope others chime in with their experiences for you. Please know, you're not alone in this journey, ok? We're a community and we have your back here. 🧡 Kayleigh, MultipleSclerosis.net team
