Hi, I’m new to this and know next to nothing about MS. I’m 21 and only discovered last week that I may have MS after losing vision in one eye. Doctors diagnosed this as ON. Since then, I’ve tried to avoid reading too much about MS and wanted to wait for my scans. But I’m suffering and I don’t know if its in my head or not. I’m sleeping around 15 hours a day, very tearful and upset (I guess this is from fear) and am feeling stabbing pains in my right hip. Afew years ago (aged 17) I started to randomly collapse/pass out. This happened up to 60 times a day for about 8 weeks, it slowed down and then stopped all together, quite suddenly. I’ve had MRI scans before they were always inconclusive, and it was never suggested I had MS. In the last four months I’ve noticed, and my friends, family and boyfriend have noticed that I’m always tired. I’m typically in bed by 10pm and don’t tend to socialise very often because of how tired I am. I also had a stint of pins and needles in my feet for 4/5 days straight just a few weeks ago. Can anyone shine a light on my symptoms? I’m terrified to go searching on the Internet and worry that reading about the symptoms of MS may make me fear I have them. Also, if anyone can explain the diagnosis process it would be really appreciated.
Hello, and welcome to the site
I really HAVE to go to bed, but I wanted to just say hi and that I’ll be back in the morning along with lots of other people, so don’t worry if no one else replies tonight!
Try not to worry. I know it’s scary, but MS really is not the end of the world. Life can still be good. I promise.
Karen x
Good morning 
A proper answer…
Have you seen a neurologist yet or just ophthalmology? If you haven’t seen a neuro, then that is the next step.
Could this be MS? Tbh, it depends on whether or not the passing out thing is unrelated. A thing called “vasovagal syncope” is very common in teenagers (especially girls); basically when blood pressure goes low, the brain makes us faint so that our head gets low and blood rushes there. It’s not dangerous and almost everyone grows out of it. So, if it was that, then it’s possible that it has nothing to do with your current symptoms. If it wasn’t vasovagal syncope, but was a form of borderline epilepsy / epilepsy, then it is possible that it was an early sign of MS. It’s not a common first sign, but it does happen. Your neuro is best placed to decide this, so do make sure that he/she is aware of it. It sounds like you had MRI done at the time, but did you have anything else done, e.g. an EEG? lf yes, tell the neuro - it would be worthwhile having another look at the results.
You should also tell the neuro about the fatigue and your feet, however I would guess that these are part of the same thing that has caused your optic neuritis (ON) - so, together, a single attack of something.
There are actually several causes of ON, although the most common cause is MS. However about 50% of people who get ON never have another episode of neurological symptoms and so never develop MS.
To explain that a bit more:
To be diagnosed with MS, a patient has to meet two criterion: dissemination in time and dissemination in space. In plain English, this means that they need to have had at least two attacks separated by at least a month and to have had at least two parts of the nervous system affected by these. Most of the relevant information to decide this is taken from the patient’s medical history and the clinical exam given by the neuro, but MRI is a very important test because MS is shown by lesions in particular areas of the brain and spinal cord that are visible on MRI. If there is at least one lesion in at least two of these areas, then the space criterion has been met and, if there are new lesion(s) on a second MRI taken after a month or so, then the time criterion has been met.
There are 4 possible diagnoses if someone has had an attack of ON:
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if they have had a previous attack that is consistent with MS and their MRI meets the space criterion, then they are likely to be diagnosed with MS.
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if they have not had a previous attack, but their MRI meets the space criterion, they are likely to be diagnosed with “probable MS” (which despite the wording is a proper diagnosis). The chance of having a second attack from here is pretty high, but not a certainty.
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if they have not had a previous attack and their MRI does not meet the space criterion, they are likely to be diagnosed with clinically isolated syndrome (CIS). Someone with CIS who has had a sensory attack and who doesn’t have any lesions visible on MRI has an excellent chance of never having another attack.
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if the neuro does not believe that the cause is related to MS, then the other causes of ON need to be investigated, e.g. vitamin B12 deficiency, genetic conditions, etc.
Staying away from googling MS is a smart move: not only is there an awful lot of rubbish on the internet, it can be very scary if you don’t know enough to be able to tell the bad info from the good info.
If you change your mind and want to know the basics at least, then stick to this website or to the MS Trust website. The info on those sites is reliable. You may still find it scary though so please bear in mind that MS is massively variable and these sites have to provide information relating to all types and severities of MS. If you do have MS, you will not develop every symptom and even the ones that you do get will vary from very mild to more severe. Overall, it’s important to remember that MS is not a death sentence! Yes, it can make life difficult and we none of us would choose to have it, but it’s still possible to have a really quite normal life. So people with MS go to Uni, get married, have kids and grandkids, travel, pursue all sorts of hobbies, etc. And, as I said last night, life really can still be good; different than we’d planned, but still good.
For now, rest loads and hopefully your eye will start to get better soon. Most people recover very well from ON, but it can take a while, so try and be patient and stay positive!
Karen x
Hi, wow! That reply from karen is amazing! She is a good soul and spends a lot of her precious time (fatigue permitting) helping us to understand what the devil is going on inside us.
as someone who is still awaiting a definite diagnosis after 14 years, I still find her explanations fascinating!
So, back to you love…
It is so unfair that someone so young, has to have this univited gatecrasher smash it`s way into their life.
The collapses you endured when you were 17 sound like narcolepsy, but I expect this was thought about and excluded, eh?
I would just like to re-iterate what Karen has said…
having MS is NOT the end of the world. If you do get diagnosed with it, give yourself time to take it in, get the right information from the MSS and please be assured that if you need our support, we are all here for you.
lots of luv,
Pollyxx