- CASE FILE
EDS-I have it....but is this end stage? Can't find any doctors who know or are willing to help - now an abdominal mass plus...
ABOUT THIS CASE FILE
I am alone….no family, no partner or spouse, no children. EDS frustration – I CAN NOT FIND A DOCTOR WILLING TO EXPLORE/DIAGNOSE/TREAT anything that doesn’t fit into a cookie cutter medical society. My medical from head to toe –
Head – up until 3 years ago I rarely ever had a headache. Now I feel my brain sloshing around in my head…I always have a headache….it is in the area between the top middle of my head to left side ear and occipital area. My left teeth are always bothered with a tingling feeling…..like they have just been cleaned. I have a droop to my left mouth area. And my left ear feels like I always have to scratch it because there is a “bug” in my ear, not buzzing - tingling. If I lay down at night even putting my head on a pillow makes my brain scream in pain. have MRI showing multiple foci...again no answers
Eyes – double vision result of 1985 car crash but now it seems my prescription changes every 6 mos. or so. Seem to have a blurry white ring around things. Eye Dr completely perplexed. If driving & I turn to look deep over my left shoulder – when I return to straight - vision is out of focus for about 5-20 seconds. When having balance issues, or move too quickly eyes don’t track fast enough to keep up movement - it makes the world “skip beat” like a stuck CD disk. Update 7/17/19 left Iris is loosing its definition and becoming “squisy”
Neck – always feels crunchy and no matter how I move it sounds like a zip tie continually being pulled.
Shoulders – Rt feels like it is ready to let go. Muscle spasms in bicep and numbness to the hand if I am on the phone or laying on rt side. Left – had previous surgery no real pain but again muscle cramping and spasms. Extreme pain & weakness left thumb. Update 7/19/19 – left thumb bone on bone starting to cut a trench in wrist bone.
Chest – some shortness of breath – some palpitations – some “lung cramping” occasional sharp pains in left & right sides
Abdomen – mass in right side unidentified – stonewalled at every DR turn for lack of knowledge and how to classify for insurance. Growing/changing monthly. This is a weighted mass – in a pool, if I try to float, it will tip/pull me to rt side & wants to pull me down. Puts pressure on rt lung when lay down. Feel like it is spreading some over, some under rt rib cage. Spine being pushed to left, during the day when sitting, standing or walking painful and will cause rt hip to feel as though it is about to give out. Feel as though going to fall through floor with certain movements. Unable to pass or process food properly, even fluid is not processing properly. I can drink 2-3 liters of water during the day and be MORE dehydrated than when I first wake in morning. No urinary pain but can go all day…. even when drinking lots and NOT have to urinate. But night I can look as though I am 9mos pregnant for distention. SOMEONE NEEDS TO GO TAKE A LOOK INSIDE! ASAP!!!!!!!! Maybe it's a fecal stone...… maybe my gut is leaking all the water I drink....something is happening and I need answers!!!!!!!!!
Bowel movements – either yellow mucus diarrhea or dark brown slug like. I struggle to go about 4 times a day just to pass small ribbons or slugs.
Lower body – left knee replaced, Rt ankle fused, fluid buildup from improper movement. Sleep at night with legs elevated to reduce fluid buildup.
Additionally, I can’t control my body temp. My average is approx. 97. If I go and work up a sweat, I am actually COLD & CLAMMY. At night I can have night sweats. As I sleep mostly on my back and barely move, when I do move it is as though someone kicks on the thermostat and I am burning up. I will have to get out of bed and most nights will walk outside to cool down. Even if it’s freezing. I use hot showers the same way to regulate my body core temp. I believe this also forces my body into the “crashes”. Or lymph system overload. I can shiver violently just from drinking cold drinks.
Almost every month I go through “body crashes” where I either run high fevers – 102-103.5 or go shocky with temps at 95-92. For either, taking long hottest showers, the hottest I can stand, helps…. but will have to take either antibiotics and/or steroids to halt and 99% of the time the fever breaks during the night and the next morning it is like it never happened. When these fevers occur EVERY joint and muscle is very painful and hard to move properly. Even my eyes will hurt to touch. Sharp pains will stab randomly here and there all over my body. I just want to lay in bed & not move.
I am looking for answers NOT DRUGS - I want to be the best me I can be in a poor rural area where good health care is hard to come by. I have multiple tests, films etc...multiple theories....but no answers
pics sent and I have disk ater disk of it all
1) mass rt abdomen
2) rx one slice from cat scan - docs say shows nothing but I see spine being pushed to left and bulging out to right......what is hiding in this area????????
3) hand showing dehydration after 1L in morning another 1L+ at lunch of water....not sodas.....or alcohol the more I drink the worse the dehydration level
4) left hand bone on bone
5,6,7) brain scan slices
PLEASE PLEASE PLEASE FIND ME AN EDS SPECIALIST (insurance is always an issue...price too) OR SOMEONE WILLING TO THINK OUTSIDE THE BOX TO HELP ME FIGURE ALL THIS OUT...…ESPECIALLY IF THIS IS WHAT END STAGE LOOKS LIKE!!!