Bad news only gets worse!!
I went to Stanford Medical Center yesterday too see another eye Doctor & have another MRI done. The news just seems to get worse everytime I m seen. Has anyone ever heard of this, Superior Oblique Myokymia?? Well thats what I have!! Also, I do in fact have Ankylosing Spondilitis. I wish they could have told me before my visit. I was thinking it was still a possibility it wasnt it. But its now a 100% positive that I do in fact have it.
I spoke with my Aunt a few days ago & sure enough 40% of my family on my Dads side has this. I told her, If I would have only known this sooner like maybe 6 or 7 years ago it would have been nice. All those tests & all those Doctors, UGH!! It could have all been prevented, just by knowning what my family has been plagued with. But its not her fault, I havent even spoken to her since I was a little girl. One memory I have of her is being in a lot of pain & walking with a cain all the time. She told me of whats yet to come & let me tell you I m afraid, more afraid then I ever was before. She has had 18 surgeries in the past 30 years. Four of which were hip replacements. So I keep telling myself this isnt going to happen to me, no way, I wont allow it too. NO WAY IN HELL!!
If anyone knows about this Superior Oblique Myokymia please let me know!! I was told this is so rare that no one Doctor has ever seen 2 cases of this in the their life. I asked if this means I get some kind of reward & the Doctor just laughed at me, LOL. But damit I should get something since I m such a rare case. I kind of felt like I was under a microscope, cause he was introducing me to a few other Doctors as the one who has this. One which I will be seeing very soon to get help for this. BUT wait, Get this, I still could have MS after all this is said & done!! So Im not too happy right now!!
Anyways, thanks for letting me vent!! Take care everyone & I hope all is well!! Love always, MM XOXOXOXOXOXOXOXOXOXO
posted by Mystical Me at 8:34 AM
21 Comments:
oh honey, I'm so sorry! :(
I have never heard of this disorder? It does seem quite rare. You know how I feel though about alternative medicine (while also being under a MD's care of course) If there's anything I can do, please let me know. I am going to ask my good friend about it and see if she's heard anything about this disease. Try not to worry, I know it's hard not to, but your mental state will affect your physical, so try to stay positive, ok? I will be thinking of you...xoxoox
I did see this support group when I did a search...you might check it out..
http://groups.msn.com/Superiorobliquemyokymia
Jlee,
Thanks so much!! I did see this support group & I joined it just a few mins ago. Why do I always get these things that have the Weirdest names, that no ones ever heard of? Whats the deal with that!!
Thanks so much & if you hear of anything on it please please please let me know. I ve been online all day reading about it & it doesnt explain very much, so anything would really help. Love always your friend, MM XOXO
Well hopefully it can be corrected! Blog hopped from fro jlee BTW.
This is so sad. Try and stay strong, sweetie. You're bound to start catching some breaks sooner or later.
God's got a reason for all this.
Though it doesn't feel like it right now, it's better to know than not; at least you know "why" now, instead of wondering "what"!
As far as joint replacements go, they have improved so much in the last 15 years that it's amazing. When my wife had her hip and partial knee 4 years ago, they told her that even a few years earlier a hip was only good for about 10 years if you were careful, now it's 30. The scar on my wife's hip I can cover with 4 fingers; an experimental surgery then, it's the norm now. The surgeon said it was like having a locksmith change the lock through the keyhole...
Like J-Lee said, don't fret about this because that will just wear you down and make it easier for all these things to control you instead of the other way around. You are strong and smart and none of these are a match for your will and inner strength!
Thinking of you!
alan
I know nothing about it hon. But I do know this, that everyday some new discovery pops up, and they can fix things they couldn't fix yesterday. So just hang in there hon.
And sometimes, well, we just have to take life the way it comes at us and be thankful for it. There is a roof over my head, food in my gut, a little money in my wallet. I have lots of good friends. My body is starting to feel the wear and tear of a long and often hard life, but I can't complain, I won't complain.
Hang in there hon, all will be well. Ya know that we all love ya.
MM
Just stay positive as best you can (easier said than done, I know....). At least you know what you're dealing with and can get the best treatment possible!!!!
Take care luv.
g
Bummer, sounds not good at all. At least it has the word superior in it!
OLE Blue,
Thanks so much, & thanks for stoppin by. XOXO
SPG,
I sure hope your right, I think I m due for some good news sooner or later. I think Ill be happy if I hear from my brother. Thats one thing that would truly make me happy right now. Thanks so much sweetheart & I hope all is well with you. XOXO
Alan,
Thank you so very much for making me feel a lot better. Its not an easy thing to know your fate isnt what you thought it was going to be. I do know I have to stay active in order to not get in bad shape with all this. Sometimes its not easy when all I want to do is just sleep. Thanks so much for always being here for me. Love ya!! XOXO
BBC,
Your such a sweetheart & you have a very kind soul. Thank you for always being here & giving me such awesome advice. You seem to always see the good in everything & for that I thank you. I cant or rather shouldnt complain. It could be worse so I should be counting my blessings instead of dwelling on the bad. Thank you!! ;) XOXO
Green,
Your so right!! But Ill be honest its not always easy to see the positive, when your feeling like crap all the time. I should be thankful that I m living in a time that things are so much better & be happy I have the help that I do now. So it could be worse!! Thanks for everything!! XOXO
Mushroom,
:) LMAO!! I love that part myself!! I really think I should get some kind of reward since I m not superior, lol. ;) Take care sweetie & thanks for making me smile. XOXO
Love always, MM XOXOXOXOXO
My God myst, when it rains it does pour. My heart goes out to you and the boys. I always think we are here for a reason; not just to smell the roses.
-The only thing you can do at this point is to summon up strength and see this through. I think of Michael J Fox, and the shit he's going through and say things could always be worse- but I guess you've heard it all before.
_My thoughts and prayers are with you love.
Polyman3,
Bless you sweetheart!! Your right about that sweetie. I am really working on not allowing things to get worse. The min I stop trying is when its going to get really bad. I m staying as strong as I can right now, & I have a lot of faith that I will beat this. Thanks so much & I hope all is well. Take care!! Love always, MM XOXO
Have a wonderful weekend!
~xo
Lee ann,
You too sweetheart & thank you!
XOXOXO
Do tell your sons about it, they should know about it when they want to have children.
MM-I am sorry to hear this! I do not know anything about your diagnosis but just by the sounds of it-just the name alone would scare the hell out of me! Please take care of yourself. My thoughts are with you! XOXO
Bernat,
Yes, the Doctor I saw last educated my kids on what they might be having to deal with when they get older. So they already know that they could have this as well. I do have to take them both in to get tested. I guess its a 90% chance they can have it, since I do. It sucks, if I would have only known before I m not sure I would have had children. I dont wish this on anyone, not even my worst enemy, even if I had one. ;) Thanks so much sweetie & I hope all is well with you. DO take care!! XOXOXOXOXOXO
Marie,
Yeah, I know what you mean, I was very scared. When he first said something to me about my eyes they were still dilated & he was showing me this thing on it, lol. I couldnt read it, so he read it to me & I was really scared. I hate when they dilate my eyes like that, & then expect you to be able to see, lol. But, he explained why it was named this long name, its crazy. Thanks so much sweetheart & I do hope all is well with you. Take care!! XOXO
Love always, MM XOXOXOXOXOXOXO
Hey Hon, don't be scared, you are young, there are always walls, there will be for the rest of your living days. Walls are just things to knock down or climb.
You hang in there toots, you're frigging special. :-) XOXOXO (and all that shit, lol)
Good good, I'm ok for now, but who knows hahahahaha
It sucks a lot... but you are super, and you know it ;)
You can overcome everything ;)
Try to be as well as you can. Even if you are bad, try to find something nice, positive, you will feel little better.
And don't give up, never.
You can do it ;)
Take care...our daughter has been sick now for abour 5 years with and indefinable thing which is being narrowed down...she has had a dreadful time... just because its rare doesn't mean you don't suffer. Best wisehs from Australia
Well, I just came across your blog and am overwhelmed by the support others have shown here. It sounds like you've a wonderful and loving group who supports you. Like one poster mentioned ... you've got a loving family, roof over your head, and food in your belly ... there are worse things in life and this too will pass.
Now ... as to that "crazy" diagnosis of superior oblique myokymia. You are right, it IS quite rare. Most ophthalmologists, like yours, have only seen a few cases. This "disorder" occurs when one of the muscles that controls eye rotation starts to twitch funny. This can give the disorienting image that the world is moving.
Most people can't see the eye twitching as it is very minute, but you can see it under the microscope like in this video:
superior oblique myokymia twitching video
As you can see, it's hard to see that little eye movement. Treatment is usually with muscle relaxant medications ... there isn't really good surgery (muscle surgery might give you double vision and make things worse). Most people seem to find a combination of medications that makes life tolerable, though, so don't fret.
Good luck, sounds as if you've a wonderful support network!
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