First post!

[crystallinecanine]

I've just made this account and I'm relieved there's a place where there may be somewhere people can relate to my experiences and I'm not simmering in my own head about these things. My name is Shy and I'm 19, it's nice to meet ya! I haven't been diagnosed yet, but I'm planning to get some tests done and to see better doctors that are better equipped for these issues.

In any case, here's a synopsis about whats been going on: September 2015 was when my symptoms started. It begun when I got off a city bus and left my wallet so I sprinted like mad after the bus. I caught up to it, but my legs started buckling. I thought nothing of it since usually after sprinting like I did anyone would have leg weakness like that. But I realized that something was not right when it would not stop. The buckling comes without warning or pain and it switches off between the right and left legs, coming with fatigue on bad days. I used to be able to stop from falling to the ground but after two years of doing extreme squats (lol), my knees can't exactly do the same. My legs are strong though so there's a plus!

I've been to various doctors and neurologists and have had various scans done on my back, legs, and brain. A result from the X-ray was that I have spina bifida occulta, a minor form of a birth defect that had never affected me before. Other than that, all MRI/ X-Ray results were normal.

I also have had myoclonus where my neck violently twitches to the side uncontrollably and atonic drop seizure episodes where either my head or torso suddenly jerk down to the ground, also not under my control. Both only while sitting but rarely while standing. The twitching also can happen on days I'm not falling. These symptoms are not as often as the legs, but when they arise, it's pretty embarassing to be twitching and dropping when everyone else is sitting pretty!

I've already come to grips that this is what I'm gonna have to deal with for a while so I've stopped being depressed about it. But my main problem is the relapses. There will be some times where I'll be going weeks with having to use my crutches but other times there can be spaces of two months with little to no serious symptoms. I know that I do have a health issue, but with long relapse times... it kinda makes me feel like somehow I am faking it sometimes.

It really sucks because I had so many plans on what I wanted to do in life. I'm almost 20 but I can't even work in the career I have dreamed about since I was a kid. Even when I can walk just fine, after standing and working hard for 2-3 hours the buckling comes back so that cancels out any work I would have any joy in. I work at home and it's fun, but... It really stings to give up dreams for something that just came up.

Just to ask, does anyone else have symptoms that seem to wax and wane unexpectedly? Sorry for the long first post! I hope it's not the only one I make. I look forward to talking with some of you!

[Lima-B]

Hi, I hope you find a doctor that can help you with a right diagnosis and find also a way to not give up on your dreams. I also had this bad feeling like a could be faking when I couldn’t walk but now I understand it’s just because they cannot find a reason immediately, so we blame ourselves. I feel just normal again, living everyday like it’s not there but I know now that it can happen again and if so, I’ll be more prepared to deal with it.

The most important thing for me was a decision to NOT LET THIS CONDITION DEFINE WHO I AM.

Best of luck!

[crystallinecanine in reply to Lima-B]

Thank you so much for the kind reply. I guess that's all someone can do when dealing with a "part-time" disability, just take it one day at a time and if it happens, it happens. And that last thing you said about not letting the condition define you is a good point, I appreciated it so much. Even though I'm not newly afflicted, those are words I would have loved to hear! Once again, thanks and best of wishes to you too!

[Leesaloo]

Hi shy, I too feel sometimes that not exactly faking it but if I'm tired and sit still I almost feel normal. I know it's because I haven't done anything and just relaxed and tried to chill but then I feel I'm wasting people's time, there isn't anything wrong with me But as soon as I try walking, talking, a bit of housework I'm back to pain, I know I'm trying to convince myself I'm ok. It's frustrating trying, failing and trying again. Not yet got the hang of overdoing it. It's great you can work from home. My job was caring for other people now it's a struggle caring for myself. I guess we all miss who we were and have to adjust to who we now are. Still working on that. Lovely to chat with you. 😊

[crystallinecanine in reply to Leesaloo]

Exactly. And it's like that for me too, because on good days I can walk right and run and go days like this, just as I used to. But when buckling happens, its like a light switch turns off.

It must have been hard if you had to let go of the job you enjoyed, I'm sorry about that. I certainly miss the days where I could just leave the house without wondering if it'll be a crutch day in a couple of hours, that's for sure! I wish you happiness and health, hopefully it comes to you soon. ^_^

[Renwick1]

Hi it's not an easy road wish you all the best

[crystallinecanine in reply to Renwick1]

This road is full of rocks and thorns, but SOMEONE'S gotta walk it to get to the other side! Thanks for your kind wishes; WIsh you the best as well. ^o^

[Renwick1]

Thanks for your reply I'm new to this site so please forgive me for trying to get around it

[crystallinecanine in reply to Renwick1]

Nah, don't sweat it! I have a tendency to be eerily positive about things at times so that was my way of cheering someone up. ^u^ Welcome to the site! (I'm a new comer as well~)

[Renwick1]

Thanks christaline