- CASE FILE
I have about 20 different issues, and the doctors will not look at them together. They only look at one thing at a time. Help me!
ABOUT THIS CASE FILE
I have had unexplained issues since birth, and over the last 42 years, they just keep increasing and expanding. I am a single mother, and sole caregiver, to my 21 year old severely autistic child, and I cannot function enough to properly take care of him or our home.
I was conceived while my mother was dealing with unexplained nerve issues on her right side that left her completely deaf in her right ear and with dead nerves throughout that side (she's never gotten answers either). I was possibly born a month late with long fingernails and toenails and lots and lots of hair (apparently I was their little gorilla baby, because I was hairy everywhere).
As a baby, I didn't sleep for more than a minute or two at a time & I screamed for up to (or more than) 12 hours straight. My mother found that bringing animals in the house was one of the few things that calmed me and got me to sleep. The doctors at the time (remember, this was in the late '70s, so....) stated that I was sleep deprived. They also said that touching me caused great physical pain, and that was why holding me didn't calm me down...to my knowledge there was no testing done for anything back then. I believe that the headache that I have had since I could remember has been there since birth, which could explain part of it.
I developed very slowly, and by the age of 2, I had severe spacial relations problems (went to sit in a chair, ended up on the floor type things), I didn't speak, didn't walk well, drooled a lot, and made lots of animal noises. The doctors told my parents that I was mentally retarded and that I would never get beyond that point. They all told my parents to put me in an institution (I would have never gotten beyond that point if they had done that back in the '70s).
At the age of 4, my mother started working with me by taking me to Child Guidance. They worked to get me to walk, speak better, try to be more social, and lots of other things that I don't remember.
By the age of 6, I started kindergarten and went through mainstream schooling. I was a straight A student, but hated being at school because of the other kids; it was super stressful.
Throughout all this time, I still was not sleeping well. The doctors tried different medications, and, for awhile, Mellaril and Benadryl seemed to help me sleep. However, even as an active child, I was often tired due to lack of sleep.
I was a very troubled child. I had anger issues, depression issues, and would often attack my younger sister. I was always stressed, and animals would help to keep me calm. I hated everything. At times I got very violant, and often times I would "run away" and hide in the woods across the street.
By about the age of 15, I was wanting to get help for the headache that had always plagued me. We started seeing lots of doctors, including a child neurologist. They ran all the tests: EKG, EEG, MRI, CatScan, etc, and foud nothing of note on any of them. I was then referred to a child psychiatrist who misdiagnosed me as bi-polar. This started the three years of hell from random SSRIs and other drugs that they tried to give me. I agreed to try them, because they claimed that the meds could help with my headache (they were wrong). By 10th grade, I had to drop out of school because of the meds. I could no longer concentrate (I could literally be staring at "1+1=" and not know what I was doing), I got less sleep than I had previously (which was basically none already), and Lithium literally almost killed me. Some of the meds they tried included: Lithium, Desipramine, Mellaril, Tegretol, and Flexeril, and there were some other SSRIs during that time, I'm sure, but I don't remember.
I re-enrolled in school for 11th grade, but due to sleep issues, I could only attend the entire year during the second half of the school day. I was still on meds at the time (I don't know which ones), and I remember staying up at night until 3 or 4 am, because my body would not go to sleep.
After I finished 11th grade (still straight As, but I had to drop all of my Honors classes and stuff because of missing 10th grade), I decided that I was finished with the meds. I stopped taking them cold turkey, and, fortunately, there were no severe side effects from doing that. I was able to focus better and get through my senior year. I had to take a correspondence course and an extra class after school in order to graduate on time. To this day, I feel jipped with my schoolinig, as I never got to take all the advanced classes that I wanted because of the meds.
During those years, there were some other issues besides the anger, depression, social issues, insomnia, fatigue, chronic headache, etc. I also had to urinate all the time. In school I was always in the bathroom between each class. Another issue that I delt with was my "spasms," or uncontrolled vocal and motor tics. The tics were mainly at home, as they were triggered by cold and/or being relaxed (I was never relaxed at school). I would be sitting there, and all of a sudden my body would jump & I would yelp like a dog or sing a high note. My parents always yelled at me to stop it, and I was like, "really, who would do this on purpose?" I was also always cold, and in the winter when my hands would get really cold, they would swell up, turn red, and itch for hours (even after warming up)….my feet did the same thing. I also had really bad allergy issues to deal with on top of everything else.
I also remember the weakness issues in high school. I was unable to stand in a line for very long without my body tilting and/or getting really dizzy and weak. I use to sit on the floor in line for lunch so that I wouldn't fall over (and those floors were not clean). I don't think the body pain had started yet though.....
By the time I turned 21, I had my son. He is very autistic. My pregnancy sucked, as I threw up on average at least twice a day from the day after I conceived all the way through labor....about 10 months of vomiting and feeling sick. Not to mention that my bladder problems were already bad before I was pregnant, so you can image how fun that was later in the pregnancy!
When my son was 2 years old, he was diagnosed with autism. It was his school psychologist that was the first person to shed some light on some of my issues (this would have been 1999). My mother was telling him about my history (she tended to do that with people), and he mentioned Asperger's Syndrome. After looking that up, I thought, "Hey! There I am!" I finally knew what some of my issues really stemmed from. I later learned that sleeping issues tended to go hand in hand with autistics, and that tourettes is one of the possible comorbid diseases with autism.
Around that time I also got pregnant again (also throwing up starting the day after conception). At around 8 weeks or so I had a miscarriage. I ended up having to have a D and C after that. At that point I started having real issues with weight. Prior to that, I had always been skinny (except when on Lithium or when pregnant). After the miscarriage, I gained weight and could never seem to keep it off. I struggle with that one to this day.
Sometime after all of that, is when the other issues started piling on....on top of everything that I had already been dealing with forever, the added pain began. I started having lots of muscle pain, and more weakness. My neck, shoulders, and back were especially messed up. So began the rounds of seeing doctors again (not something that I enjoy doing after past experiences). They did all the tests again, and blood work, but, as always, I was fine.
They stated that I didn't have Chiari Malformation, lupus, MS, or any of the other things that made sense. My thyroid levels were in normal range, as was pretty much everything else. No one knew what to do for me. They tried different medications, but, like before, my body was not a fan. Gabapentin turned my body into a Mexican jumping bean, flexeril didn't help, other meds had evil side effects, etc. So, that was fun. Someone later suggested that my Asperger's made my body over sensitive to medications, and that may be why they not only don't work but also have severe side effects (that makes sense).
I also saw a urologist somewhere back then. He did testing and decided that I had Interstitial Cystitis (that has since been disputed and changed to Overactive Bladder). He tried me on different things, but you can guess how that worked out.
Now, I am about to be 43 years old. I am sooooooooooooooooooo tired. I have multiple part-time jobs (I have to work around my son's schedule), and I am the sole caregiver to my now 21 year old autistic child who is only partially verbal, doesn't chew food, and is still in diapers. My house is dirty, as I am too broken to clean.
To summarize my issues at this point, I have excessive facial hair, and my whole body is quite hairy, but I cannot seem to get anyone to do a real hormone level testing on me. I don't sleep, I have mild sleep apnea, My "spasms" (aka Myoclonus/Tourettes) are awful when I am at home, and they get really bad when I try to go to bed. Oh, and I also was diagnosed with Restless Leg Syndrome as a separate, but equally annoying, movement disorder. My chronic fatigue is awful, my muscle weakness and pain are constant, I tend to walk with a limp as my legs just give up. I have to pee all the time, my mind is shot, and I just want to sleep!!!!!!!!!!!!!
I have spent most of my life merely existing while waiting for death. Each day is just another repeat of the last with no end or help in sight. I am tired, I am weak, I am exhausted, I am in pain, I am broken. I no longer desire to do things that I use to do (like write, sing, photography, or live).
Every day when I wake up (tired, weak, and dizzy), I fear that this is the day that I am just going to pass out and end up in the ER (at the same time, I think I secretly hope for that to happen as well as fear it). Will this be the day that my body just says, "I quit!"? Well, it would break the cycle of every day, but, no, I am still existing (not living, only existing) as a semi-functional zombie trying not to end up in the psych ward.
Can anyone help me?