Hello, I am 18 yrs old, and I have had this problem for about 5 yrs now or more and I'm really worried what is wrong with me due to the fact that my symptoms seem to be getting worse with each and every day. I have posted this before on MedHelp on various Communities since I joined in February, but my problems are extremely worse now than they were then. I have been to numerous doctors before and if you would like to know which ones I have seen, I’ll be glad to list them. Right now though I FEEL AS IF NO ONE CARES ABOUT ME!!!!!! :(
I was diagnosed with a Chiari Malformation that was about 13mm in 2007 which they discovered in an MRI. I have had surgery done on June 13, 2007 in order to cure it. It only cured my severe headaches when I laughed, but it didn't cure my strange vision problems and daze feeling that I have 24/7. I also have Fibromyalgia which I believe might be misdiagnosed, near-sightedness, astigmatism and Lazy eye.
My vision problem first started off when my vision slowly became blurry with blind spots. Now I see strange colors, kaleidoscope-like, in my vision 24/7 with my eyes opened or closed. These colors have been getting worse since when I first posted these symptoms on MedHelp until now I see really bright flashes of light that engulfs my entire left eye at times. It first began as a tiny spark and now like I said, it’s like someone is taking a big flashlight and shining it right in my left eye and continuously turning it on and off. Sometimes it is a white or yellow light but other times it appears green and gradually “slides” across my entire left eye. I have severe pain behind my eyes 24/7 too now that feels like someone is stabbing me right behind both of them. I also have water or puss coming out of my eyes that keeps coating my glasses and I have to clean them multiple times during the entire day. My eyes are very itchy too.
I also have a very strange feeling in my head 24/7 like I not even here. I really don't know how to explain it, it's like I'm not here or as if I'm dreaming. My short-term memory is horrible!!!! I also keep getting my speech messed up when I talk.
Other newer symptoms that I am now experiencing that I didn’t have in February. It is now a “chore” for me to even walk from point A to point B. My legs don’t even seem to want to carry me. I have severe pain in my ankles, knees, shins, and sometimes my calves 24/7. I feel as if I’m walking like how someone would after they have been horseback riding for a good while nonstop (I have gone horseback riding before for a hour nonstop so I know how I felt once I got off of the horse). My legs don’t even seem to want to move right, almost like I’m limping without the limp if that makes any since. My bones have been locking up and cracking really loud and I’m completely losing the arch in both of my feet. I also have been stumbling and almost fell down multiple times now as well as twice on the stairs. :(
I am experiencing great deals of stress due to these medical problems and I know that it isn’t Stress like my doctors are telling me it is. They told me that as well about why I got severe headaches when I laughed as well and then I went to see a new doctor and he truly did find something other than stress wrong with me. So for my belief and for this reason I know that something is very, very wrong with me, it just hasn’t been found yet. I'm really sad and discouraged about these health issues. :( I thought they were getting better for awhile only to find them come back and strike twice as hard. I just feel as if no one cares at all about me. I feel like I'm completely different than everyone else and I'm sooo sad lately. :(
Worried about going blind or becoming crippled as this symptoms are becoming a whole lot worse day by day. These symptoms got ten times worse since February and that is a such a short period of time to get this bad. If that is how I'm now since February, I wonder how am going to be in four months from now. So in August I might be even worse than I am now. I can't even imagine and don't want to know how much worse it can get. :(
Please if anyone has any information on what may be wrong with me, PLEASE DON'T HESITATE TO RESPOND! I can't stand this feeling anymore!!!!!!! Any and all information received will be greatly appreciated!!!! :)
P.S. If anyone has any other questions, please feel free to ask me. I have some other symptoms that I haven't listed here in order to try to not have this post too long.
I'm so sorry to hear about your situation. Have you had a brain MRI or a CAT scan since your surgery? I, too, have an ongoing undiagnosed condition and my doctors have said that my symptoms are unrelated. I think it would make sense if a gland or something was swollen in your brain or if it wasn't sending messages to your body correctly. Or perhaps its a nerve disease, where your nerves fire messages to your brain at inappropriate times.
If you feel like you're having physical manifestations of problems and the doctors do not agree, it may be a psychiatric problem cause by something in your brain or in your chemical balance. Try to see one more physician, tell him your timeline, and just don't mention that the other doctors don't believe you so he can see you with a fresh view. If he, too, agrees that your legs and/or eyes are fine, ask him to refer you to a psychiatric evaluator. This could turn out to be a simple chemical imbalance. Don't knock it til you try it and best of luck!
Thank You Sooo Much for your Response, I greatly appreciate it!!!! :) I did have a couple MRI's of my Brain since my Surgery and the Doctor said that the Chiari hasn't reoccurred.
I'm very sorry to hear that you too have an ongoing undiagnosed condition. :( I hope that you will be able to find all of the answers you are looking for very soon and that you will feel much better. :)
Oh, my Rheumatologist said that it might be something wrong with my nerves but I'm not really sure if that test would be a good idea for me to have done or not. I'm going to have my Retina checked very soon in order to see if that might be what is causing the weird vision problems. I'll let you know what I find out. :)
I had my Chiari Surgery about 4 months now. It sounds like your 13mm Chiari has produced long term symptoms. I still have some and don't expect to have them go away but with a 13mm Chiari your symptoms could be permanent damage of the chiari and not another problem. The Chiari surgery just stopped things from getting worse but some of the symptoms are irreversible. It's probably your Chiari symptoms
Thank You sooo much for your response, I greatly appreciate it!!!!! :) :) :) How did your Chiari Surgery go? I hope it went very well and that it was able to help you. :)
I'm going to check with my Neurologist again if the results of my ERG Retina Exam comes back okay. My eye doctor is testing me right now for a Retina Detachment and/or another retina related problem. I'll let you know what I find out. Thanks again, I greatly appreciate it!!!!! :)
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