I'll preface this by saying that I'm sorry for the long post...because I tend to be totally full of hot air.

At 17, I had my first real memorable "episode" (even though I had been fighting severe fatigue for a year at that point) - extreme weakness (especially on my right side), fatigue that made small tasks very taxing, gait oddities due to stumbling and my right foot kind of dragging, and my balance just gone to heck, along with crappy vertigo. Went to a neurologist who had me do all the standard stuff (touch finger to nose, stand up and close eyes, blah blah)...which showed my weakness, especially in legs, loss of balance (as I fell over when I closed my eyes), and the tremor I had. But the MRI (of brain only, not brainstem or anything) came back clean, so I was sent to physical therapy. It had started to get better a little bit before the MRI results came back (about a month had elapsed since the "episode" onset), so I accepted his treatment and didn't want to cause more trouble for my aunt who had been taking off work to take me to doc appointments.

It never got completely better, or even like it was before the "episode", but I dealt with it and didn't complain about it. I tried convincing myself it was in my head, like I was making a big deal out of nothing... but things slowly came on....muscle twitches would happen every once in a
while, then more often, then it became constant. I began to get shooting pain, numbness, and more brain fog than I'm used to.

I'm 20, nearing 21 now.... This spring, I got a cold during Finals week. It made me feel crappy, but it was just a cold. It was still hanging on when, right after finals were over, I left for my 3wk college exchange to Ireland. The whole plane ride, my muscles were cramping almost constantly. The second day in Dublin, I woke up feeling horridly weak and exhausted. I took a hot shower, and suddenly (maybe 5mins in), I was so dizzy I couldn't stand...my legs were so weak they were giving out. I thought I was going to vomit. I sat on the toilet seat while I shakily pulled on my clothes as fast as I could, then hobbled straight to my bed as my muscles gave out. I skipped the whole day because it was hard for me to get out of bed.
In fact, 2 of the 3 weeks were spent with me being very, very weak, in pain due to my muscles twitching and spasming, and all kinds of other things. But it got better - somewhat. I had to quit my waitressing job because I physically couldn't do it anymore.

Then in September, I got the flu. Then, right after it started going away...exhaustion. I had to drop 2 classes, and missed the majority of my others. I couldn't do it. Once, I took the 1 step up from my porch to my doorway and....my legs just collapsed. The muscles went to water. It's happened a few other times since then. My muscles twitch 24/7, though it could be anywhere...a finger, leg, thigh. Sometimes you can feel it, but not see it because it's a "deeper" muscle, but sometimes I don't feel it and see it. It feels very weird when it's a muscle I can't flex voluntarily (and wasn't even aware of) suddenly spasms...it's a really weird feeling!

My doc originally gave me a b12 shot (since I'm a little anemic) and sent me home. I came back 2wks later sobbing because I couldn't even take care of myself due to fatigue and everything was spiraling down the toilet since I couldn't do ANYTHING substantial. She sent off for a Rhum. Arthritis and ANA panels. Both came back negative.
I was given Lyrica for the INTENSE, shooting pain in my chest - but it doesn't help at all.
I'm suffering at school with my memory as well. I was diagnosed with ADHD this spring - the meds used to help a lot more than they do now. There's a different kind of fog that is NOT ADHD fog...and the meds don't touch it. But, geez, a good bit of the time I'm so tired that 20mg adderall doesn't even give me enough energy to get up and do things anymore. And even though the "episode" kind of tapered off after about a month, I'm still worse than I was before - more exhausted, weak, and with more nerve pain, more eye pain, more numbness in my feet, more muscle twitches, and more memory issues.

MS totally matches with my symptoms, even down to the little things like trouble swallowing. But, I've been through this before with a Neuro when I was 17, and my MRI was clean.
Sometimes I wonder if I'm just being stupid and making something out of nothing. I...honestly don't remember what it feels like to feel rested. So then I wonder if maybe this tiredness IS normal and I'm just being a whiner about it. And what if the MRI comes back clean this time, assuming he orders one? I have a Neuro apt on the 10th. But if it does, then what? And if it doesn't, well...that sucks too!

I'm really lost on this. Am I making too big a big deal out of it? I turn 21 on the 16th of this month....ugh.

Hello, Hoshi.

It's probably time for you to see a neurologist again and have testing done. It's not uncommon, in MS, for lesions to show up on a MRI. If not MS then you still need to find out why you are having the symptoms you are having.

Welcome, Hoshi! With all that's been going on, I don't think you're making too big a deal out of it. You're smart to go back to a neuro to get rechecked. Snoopy's right, MRI's don't always show a lesion...It's an imperfect science, I'm afraid, but well worth trying again. If you can, see an neuro who specializes in MS, they're usually better at knowing what to look for. Good luck!

Hello Hoshi and welcome to the forum.

I agree that you should consult with a Neuro that specializes in MS. You don't sound like you're making too big of a deal about your symptoms. I'd want to know what's going on, too.

MS is sometimes difficult to diagnose. Plus, you're very young. Your Neuro probably considers your age to be a factor, too. While it's not unheard of for someone your age to have MS it's more common in older people.....usually in their 40's and 50's.

Let us know how you're doing!

hello and welcome.

I hope you find a neuro to get this checked out. its no fun to not be well, and to struggle.

For 12 years I thought I was crazy and that I must have a mental disorder. All my MRI's came out clean too. Then one day AFTER some of my worst symptoms were getting much better, my doc ran another MRI and low and behold many many lesions showed up. I was relieved NOT to be crazy. Just keep on trying to find whats going on. Let your doc know how frustrated you are and how you feel.....these types of things can get us so far down that depression sets in. If your doc says its not MS, then you have to ask, "well, then what is it?" Thats a fair question and keep fighting for the answer. Big hugs to you.

Welcome Hoshi..

Nice to meet you Hoshi and welcome . I went through many years of thinking it was all in my head. It wasn't. Don't give up! As others have said, a MS specialist would at least be able to rule out MS and steer you in the right direction. Good luck .

Aww, Hoshi, sorry to find you here and feeling so bad for so long. I went through MS testing when I was 16, many many years ago. I didn't know what they were looking for and was scared. I didn't know anything about it at the time, and there was no internet. I think you're right to be concerned.

It does sound like you have a lot of MS-type sx. I would definitely follow up with another MRI if you can get the doc to order one. I only have a few brain lesions, but many symptoms, and my neuro can't always make sense of why I hurt when and where I do since I don't have any evidence of problems there. For example, I have no spinal lesions, but have a lot of trouble with my legs and now with the MS Hug, which I understand would indicate spinal involvement. What I'm saying is, lack of lesions doesn't completely rule out MS. And they don't so much determine you have MS, as rule out that you have anything else like Lupus and Lime Disease (among others), which have similar characteristics (without lesions, I think).

Learn what you can, patiently pursue medical help and do what you can to alleviate symptoms. I hope you get a definite diagnosis soon. Limbo sucks! I was only there for a few months and that was tough! Hang in there!

hi hoshi,

i'm sorry for what you're going thru.
it is time to see the dr again for a reevaluation of your condition.
take one day and one thing at a time.

but, don't give up. now that you're 21 (congratulations) you need to be your own best advocate. and, it's not a bad thing to get a 2nd opinion either.

please let us know how you are.