Hello all!!
I'm so very glad I found this sight! You know in you mind that there are others out there like you that have no diagnoses and that the Dr.'s have dismissed or given up on but, you can't stop that feeling of loneliness and isolation.
Anyway, my story begins at the beginning of Oct. 2003 in Ireland. It was my last yr. of college, finally after 6 long years I would graduate! Unfortunately, graduation was not in my cards. After having a wonderfull time in Ireland my father and I were waiting at the gate for our plane. The flight next to us was Air India, it seemed almost like the entire plane was filled with children! Some of the children were sick and lying down next to us. Ok, skip forward to 8 or 9hrs later when my father and I got back to our house. I got sicker than a dog less than 1hr off the plane. I was sick for a good week with what seemed like a nasty flue and then started getting a little better. (hey I was no longer throwing up, that's a plus) A good three days after I was out with my boyfriend when all of a sudden my right side of my face went numb! That freaked me out a little but I thought it would just go away after a little bit. Another 2hrs. later my entire face was numb and it was creeping down my right arm. Needless to say I went to the ER. By the time the Dr. saw me I could no longer speak properly as my tongue was numb as well, nor could I right what was wrong because the numbness had made my right arm dead weight and the same was happening to my left arm. They ended up taking a spinal tap and several other tests that night and I stayed hospitalized for 3 days. By the end of my stay the numbness had spread all throughout my body! When I stood I could no longer feel the ground underneath me, it was like learning how to walk again. The Dr.s didn't have a clue what was wrong with me! So they thought that it was stress from school; even though I was evaluated by a group of psychologists and psychiatrists that negated that reasoning. So the Dr.'s sent me on my way and basically told me not to come back.
The numbness lasted for over a year; along with the numbness it seemed I got sick at the drop of a hat! My immune system never recovered. After learning how to walk and talk again I started to do a little better. I even went out and got a job that just required me to answer phones and sit. Unfortunitly every time I would get a job, like time work I would fall very, very ill within a month and a half of working. This was soooo very frustrating as I had worked 3 jobs at once before Oct. 2003. The last job I had was in 2006 as a res. agent for an airline and like the other jobs I feel ill exactly 1 1/2 months in to the job. The only difference was I never got better! No one new what was wrong with me! Again they thought it was just a flue but 2 months later I had lost 20lbs from lack of eating, had a fever every day
(Which is unheard of for me because I NEVER ran a temp! Only time I ran a temp was when I had a kidney infection at 19), constant vertigo, migraine headaches, nausea, lack of sleep, chronic pain, chronic cough (which got better after 3months) and my numbness was starting again (not as dramatic though, it would ebb and flow), almost forgot I would pass out daily. My regular Dr. sent me to all kinds of specialists but no one could diagnose me. They either said it was an after effect of CMV or I was depressed! One Infectious disease specialist even said it was a result of my mothers death that had happened in 2004. (he also wrote in his notes that she committed suicide which was totally wrong my mom died of a heart attack) I could barely move 2 feet with out my legs going out underneath me, so as a result I had to resort to using a walker and wheelchair. I stayed this way with no change until just this past Christmas. I have improved a little since then. I can now walk with out my walker most of the time, I can go out of the house for things other than Dr.'s apt. It may just be for a little drive to the coffee shop but hey that's something!
During this time I was diagnosed with just 2 things however I have found out many things that I don't have! I was diagnosed with CFS (chronic fatigue syndrom) for lack of finding something concreat medically, and depression. I see a therapist one on one a few times a year now since I mostly go to his group therapy. The doc's have also put me with a psychiatrist that I see once every 3 months. What I find truly hard now is recognizing my symptoms. I have had them for so long that has just become a part of my body, unless of course I have a bout where it will get a little worse. For example my fevers never went away! Oh I don't get them everyday (at least I don't think), normally I run a low grade fever most evenings, it is only when my temp raises to over 101 that I start to notice.
(at this point I have to apologizes if my writing becomes fragmented, I can focus for a little while and then my thoughts will become scattered and unfocused)
Oh, I did forget to mention another symptom! My senses are amplified; when I listen to the tv the volume has to be set very low, direct light or florescent light bothers me, I am more sensitive to smell...the wrong smell can make me gag or give me a migraine. I applied for disability in the fall of 2006 and am now on my 3rd appeal. Because I don't have a medical condition that they can put a name to I keep getting denied. What is interesting is that my 16yr old cousin now has the same symptoms as me. She has been taken out of school and told that she will never be able to drive or live a normal life. They know that she has a couple of sleep issues that contribute to her bodies issues. So, I went to a sleep study to see if they could find anything. What they found was that I don't get REM sleep and I wake up 77 times a night also, I have partial narcolepsy. That is that I fall asleep within 3min. but I don't go into REM while sleeping. As I don't go into REM sleep I can not be considered narcoleptic but partial. My cousin has full blown narcolepsy.
Now I just live day to day as best I can. I have no money and I can't work so I'm living with my father, we get along well so that is fine, It's just that I'm about to turn 29 and am living with my father never having lived on my own! But I recognize it could be a lot worse and I am grateful that he lets me live with him! My goal is to finally get my degree that I was so close to receiving in 2003. The only problem with that is I majored in Theater Performance which is very physical and I still lack practicums.
Anyway, thank you for letting me ramble on...I'm sure I forgot to mention some things but you get the gist of everything. I can't wait to read everyone stories!
Take Care,
Tiffany