I am 25 and I have a long and complicated history of problems to the point that I've started to believe I must be imagining all of these things!! The doctors have assured me I am not, and have told me that they expect to probably see me on mystery diagnosis when this is all figured out! I hope that by posting here I can at least get some ideas for things to check for as the doctors are stumped.
I was diagnosed with Tourettes syndrome at age 11, however as my family would say it didn't gradually appear, it was like it was overnight. My tourettes never got better, or improved with age like I was told it probably would. Rather than typing a paragraph out for each stage of my life I'm going to sum it up with symptoms.
-Polyneuropathy (feels like I have second degree burns on my arms, legs, hands and feet worst when I wake up from any length of sleep)
-Edema (Low sodium diet didn’t help)
-No change or increase in endurance even with regular exercise
-Painful tics (eye blinking, stomach tensing, head shaking)
-Blue spots that appear on my abdomen (where my stomach is)
-Unintentional self mutilation (I rip my eyebrows out, and rub the skin
Off my face, and bite my hands…other people have to tell me to stop because
I usually don’t realize I’m doing it)
-severe lactose intolerance (My gallbladder and stomach contract and stay that way for hours, I’m in so much pain I usually have to go to the ER to get it to stop) I also vomit violently to the point that only yellow stuff comes out and if It goes on long enough, some blood
-My hands just let go of light objects without me realizing it, I have to grip things hard to stay a hold of them recently even heavier objects fall out of my hands
-worsening balance issues
A few bizarre events to mention:
-Recently I lost the ability to write legibly with my right hand, around the same time I had to go and give a lot of blood for testing (6-8 vials I’d say but I looked away fast when I saw them so I can’t be sure) and the next day, the polyneuropathy got a little better, like it went back to the way it was 2-3 months prior and then after 2 weeks came back with a vengeance
-Also when I get ill with something like a sinus cold the burning sensation also lessens but the weakness stays
-Recent ultrasound revealed unusually thick gallbladder and stomach walls when checking to see if I had a stone stuck. No stone was stuck so they described that much pain as being odd
-I don’t drink or smoke, and I eat pretty healthy (I don’t really eat a lot of meat or junk) yet, they said my liver is really fatty. And when I say I don’t drink, I mean that I have been drunk maybe 3 times in my entire life…and it literally only takes a TINY tiny amount of alcohol for me to be completely inebriated.
-I was vaccinated recently and blood squirted out of my arm (freaked the nurse out a little heh) I don't know if its relevant but I figured I would mention it
As long as I can remember I have had:
-Extreme sensitivity to sounds, textures, tastes
-Pain and sensitivity all over my body (do not like to be hugged, touched etc)
-Extreme mood swings
-Trouble writing, holding pencils and pens properly
-Obsessive compulsive issues (Though they have recently said that its OCB associated with possibly being on the autism spectrum, and not regular OCD)
-insomnia (restless, trouble getting myself to lay down and go to sleep)
-Over sensitive and under sensitive bodily urges (I never feel hungry, but if I even touch water I feel like I have to go, and there is no “start to have to go” it’s either nothing or an emergency)
-2-3 severe ear infections a year from age 5-22
-Easy bruising (I could give myself bruises if I wanted to without even really trying)
-Tremors that come and go
-Body twitches/jerks that have gotten worse over time
-I move extremely slowly, and people complain for me to move faster…and I just can’t…its like I don’t -have the kinetic energy to do so.
-Trouble with fine motor skills (tying shoes, opening bottles, jars, picking up small objects)
-Violent urges to pinch, hit or bite people that are getting harder and harder to control
-Morbid thoughts (worsening)
-Balance issues (if someone pushes me even slightly, I will fall down)
-heightened sense of pain
-walking with my right arm curled around my body (worsening, arm is tighter to my body than before)
-walking leaning slightly to the right (worsening)
-Trouble gaining muscle even when doing muscle building exercise
Psychologist I (seen from age 11-16) said:
Tourettes, Multiple tic disorder, sensory issues, and possible “mystery disease” (current docs say there’s something missing out of my file that they appeared to be testing for)
Psychologist II (seen from age 24-25) said:
Sensory processing disorder, Severe anxiety (that appears to be triggered by sensory issues not social anxiety), and possibly Aspergers (though strangely, I am extremely high functioning with the sensory defensiveness of someone who is extremely low functioning)
Geneticist (saw recently):
Monotone speech, obsessive touching of objects, obvious motor tics, overly sensitive body, swelling in legs, possible metabolic disorder (Wilson’s disease mentioned), liver and spleen not enlarged
Liver specialist(last year):
Baffled by lactose intolerance causing liver problems, told me to just stay away from milk
I have been diagnosed with/been suspected of the following:
Fibromyalgia (ruled out as I do not fit fibromyalgia pain)
Aspergers/ASD (still testing)
Tourettes (now being questioned)
Sensory Processing Disorder (confirmed)
Wilson’s disease (still testing, but no kayser-fleischer rings)
Hepatitis (suspected but ruled out)
Diabetes (my blood sugar is always perfect when they test)
Things that may be helpful:
-I am considered overweight, but I do not really look it at all (I literally weight 190 pounds and I look like I am 50 pounds lighter than that and it doesn’t make ANY sense especially considering I can’t seem to gain muscle mass beyond light toning)
- family history of heart disease
-family history of learning disabilities (though they do not think that I have one, just that my brain learns differently)
-family history of severe anxiety
-extreme Calf tenderness occurs in all women on my mother’s side of the family
Ok, well I am sure there is more I’m forgetting but hopefully that will be enough for some ideas…before I just kind of dealt with all of it but it’s getting worse at a rapid rate and I’m getting scared. I am afraid that I will soon be unable to work.
Thank you for any clues you can provide...
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