I am sorry I am just sick of all the tests being normal or negative so they can't find anything and think everything is normal. It really makes it to where my mom believes it is in my head more and more. Sometimes I even find myself thinking it. I am just whining. Forgive me.
Tahiri
I am right there with you on the waiting thing! It is so aggravating, I know what you mean. I just hit my two and a half year mark and I am starting to feel like they are never going to figure out what put those 10 white matter lesions on my brain and what caused this visual field defect that has almost totally stopped my life as I knew it. I am dealing with a lot of anger as of late because of this very issue.
I don't want any disease, but it is obvious that something happened and something is going on in my body, but WHAT? That is the million dollar question. Don't worry too much about people not believing you. No one believed me at first that I could't see, but the visual field test and MRI prooved that I was telling the truth.
You know when something is wrong and my advise, coming from someone who has been there is believe in yourself and listen to your gutt feeling on this one. I wish none of us had to go through this horrible waiting game, but we do and together we will make it and be OK! You are not alone, and I just wanted to let you know that!
Your freind
~Santana~
I am sorry you are having this happen to you. Waiting is so difficult isn't it! Not that we want to have a bad disease or anything but it would be nice to know what the monsters name is that is hanging on to our body :) I have found so much support from this community & we know that it is not "all in your head." Take care of you & don't forget to breathe :)
Janette
In libo land with the best
Thanks. My diagnosis is between MS and fibromyalgia, I am just trying to figure out which one. I am trying to make one fit in my mind. No offense to anyone, but the one I want to fit is fibro, but it just doesn't add up. I still hope, so I keep track of all symptoms and patterns. I hope I figure something out. Sorry to bug all of those out there, but I just want to know which one. I know many are in limboland, but I guess because I am closer to a diagnosis, I am hoping that it is not at the same time. Does that make any sense?
Does anyone know some differences between the two? My PCP says that all we can do for now is wait for another flair or even longer. Time will tell, but I am impatient. I am waiting for a really big flair, because the next step is an LP and I want to make sure that if it is going to be positive it is really positive, but it may be a long wait. So for now my PCP and I can only look at the patterns. We are both researching. He said he was also going to look into some more mimics or to see if there are any more that have not been ruled out. Sorry for babbling.
I just really don't know what to do at this point because I am tired of waiting and waiting. I get the feeling that my mother and father don't believe this is real and that it is all in my head especially my mother. She also believes that fibro is nothing and most people have it and it is really no big deal. There is no way that is true if it causes this much pain in people. At least my husband believes me, I don't know what I would do if he didn't.
Sorry guys,
Tahiri
I had extreme twitching around my eyes and on my face about three months after onset in April 2006. It was severe and lasted about three months and then was gone. I am not dx with MS but have been between ADEM and MS all of this time. They both do the same kind of damage so maybe it is common, I'm not for sure, but I did have it bad around my eyes and the nerves looked like they were jumping up and dancing, literally! Other than the twitching I had some transient numbness/tingleing that was fleeting and also some fleeting warm feeling running across one foot. Also some kind of Vibration in my ears and head and some vibrating on different parts of my body , all of these at different times during this, but never lasting long.
My neuro has only said that these are residual damage signs from the nerve damage to different areas from the 10 brain lesions. I haven't so far had any new lesions or attacks since the onset two and a half years ago. So for now My dx is still ADEM.
Hope this helps some!
~Santana~