What were your initial symptoms?
MS is so different from person to person, I always find it interesting to hear what people's first symptoms were.
For me, things happened pretty quickly. I woke up, went to get out of bed, and then fell flat on my face. I was able to get up and go but fell several times throughout the day. Less than 48 hours later, I was in the hospital unable to even stand up on my own. So my initial symptom was severe weakness in both of my legs that progressed quickly until I wasn't able to use them at all. I was in the hospital for over a week while they ran tests. Eventually, I would be able to use my legs again and was discharged. It then took many months to make an official diagnosis of MS. My legs were the first things that were hit and continue to be an issue for me (still with weakness but now also with pain, spasms, and spasticity as well).
What was your first indication that something wasn't right? What happened that began this MS journey for you, that made you see a doctor?
When I was 36, double-vision and occasional loss of vision are what made me call my GP, who then told me to go to the ER. But, I had no idea where the ER was, because I had no idea where I was. Years later, I could map a trajectory of symptoms that had begun at least 5 years prior (e.g., less able to walk, balance, remember, and do anything after 7 PM..anyone who I mentioned this to said, "yes, you are getting older"...). I was in my early 30's then.
At 40 years old, woke up one morning blind in one eye. After a visit to my eye doctor, I was referred to a neurologist and diagnosed with MS. I experienced two additional exacerbations affecting my eyes and eventually my legs.
That must have been frightening,
. How long did it take for your vision to return? I hope your exacerbations are few and far between. Best wishes. - Lori (Team Member)
Yes, when telling someone once about the symptoms that I had when arriving at the ER, they said, "Well, that's just stupid. You didn't notice any of that stuff? I don't believe it." At that time, I was still recovering and my brain was slow, so I could not school this guy on the fact that the brain also controls how people "self-monitor." So, if the fibers connecting the parts of the brain that communicate in order to help us to recognize our own movement and memory, etc. are damaged by MS, then a person can develop a ton of symptoms and not notice them!
What a horrible experience,
! You must have felt so helpless. There is no excuse for that whatsoever. I hope someone was forced to take responsibility for what happened to you. Thanks for sharing your experience here. People need to understand the impact of this kind of treatment on those who are suffering. Wishing you the best. - Lori (Team Member) it’s soul destroying to be spoken to this way. If your fuse box is striking out , you have no idea which lights are not working until you enter the room. Meanwhile you’re busy trying to work out why the hot water feels cold . My background is in critical care nursing. We need to be listened to not treated like ranting toddlers. All we can do is hold the line and with our descriptions , endeavour to educate those who hope to treat us . Whether they use our experience constructively is in their hands .
Keep up the weird symptoms conversation whatever it is - it’s as real as it gets!!
My first symptom back in 2008 that was unmistakably my M.S and led to my diagnosis 2 months later was numbness in what they called "the saddle area"... think about that for a sec and you can guess why I went straight to the docs! Numbness has been my body's main super power of choice ever since.
I never heard it named! I had that for a while and it scared the crap out of me. This was after diagnosis, and I just thought it was random numbness. Thankfully it went away, and I haven't really experienced that again! Thanks for teaching me something today! ooh yes ! First symptom I had that gained a proper reaction was similar. On morning of appointment I’d sat on loo ( or thought I had) and promptly fell off - could only feel one side . Remembered at close of appointment . Witnessed consultant have a true lightbulb moment
Always, always advocate for your dignity however odd it feels.
My first symptom (many many years ago now) was tingling in the hands and feet.
Thanks for sharing that
! I'm going to guess that that is a common issue among many folks! I still get that kind of tingling in various parts of my body too.
