Discussions By Condition: Medical Stories

Fatigue, Pains, Vitamin B loss, Skin Rash and Sores

Posted In: Medical Stories 2 Replies
  • Posted By: Abbydoodle
  • July 30, 2008
  • 04:45 PM

I am going to give a list of symptoms I have driven doctors nuts for since 1980. I was finally diagnosed accurately in 2006. A medicine to help was only created and approved as of May 2005, wasn't I lucky? My diagnosis has no cure but is explained. At the end will show why it is not Fibromyalgia or many of the single disorders themselves. Sometimes we have to go deeper than what our doctors are familar with and are taught to deal with. It is not their fault. It is what they have been taught. I started medical courses in the 70's. I remember. That is partially what kept me pushing.

Here are my symptoms. Care to diagnose me?

At birth, seemed to have problems with milk. Doctors told mom was allergies. She would fix sugar water or powdered milk with water. I seemed to do better. I still threw up a lot. Was born in USA AF hospital in England. Exposed to Royal Nurses that later involved in the issues with what US calls Fibromyalgia.

Throughout young life always was throwing up. Doctors said I had very bad sinus drainage. Yes I did. Seemed would vomit more in morning than other times. Doctor finally wrote note to school saying it was okay for me to vomit after meals. It was sinus drainage and food allergies.

I had some normal and not so normal childhood illnesses: mumps, measles 3 times, chicken pox, ringworm (fungal), empitiago, staph infections evertime I fell and scraped skin, continuous strep throat and sinus infections; pseudomonas of the throat; rheumatic fever, rheumatoid arthritis flare ups during teen years.

Had tonsils and adnoids out because they blocked my airways. Never breathed through nose til age 7. Everytime I played outside I would become overheated. Would have to stop playing. Father had same problem as child. I was tired a lot, slept a lot.

Fast forward to my twenties, by this time I am pain. Muslces hurt most of the time. When they don't the joints do. Can't go to sleep. Have trouble sleeping. Have restless legs. Because of brain activity am not reaching REM, stage 4. Because of all this have severe fatigue, brain fog, hard to stay awake. (Later diagnosed with Sleep Apnea)

Have bruxism. Crushed four of my molars. TMJ severe pain. Finally have splint built by one of best docs in city. that helped some.

Constipation, diarrhea, abd pain. abd gas (lots), nausea. Acid reflux.

Severe recurrent headaches everyday. Multiple headaches a day. Migraine, tension, cluster and other. Neurologist was having a field day.

Premenstrual problems getting worse and worse. After married. Had 8 miscarriages., finally could not walk anymore pain radiating from middle of back down legs front and back. Had to have hestorectomy, oophrodectomy. Had very extreme case of endometreosis all over inside of ABD and had many Tumors and cycsts, precancer cells. And had adenomyosis.

I had a salad bag of symptoms that fit nothing sometimes: chest pains but not heart, morning stiffness, cognitive or memory loss, numbness and tingling sensations, muscle twitching, irratable bladder, a felling like I was swollen all over, skin was sensitive, dry eyes and mouth, dizzy, impaired coordination (broke my toes so many times, quit counting).

No longer could tolerate heat. House and work had to be cool or I would faint. Changes in weather made me sick. Yeah depression set in.

The onslaught continued. My body did start swelling. I could no longer exercise. I use to run 4 miles a day and swim 2. I could not walk one.

Stress intolerance. Had tendency to fall apart or roar and bite someone's head off.

My skin had rashes, sores, was motle. Had odd bumps on my foot and ankles. Started having odd scaley brown places show up. Rocecea on my face.

I broke bones in my feet, ankles and legs, tore up both knees, and shoulders --rotator cuff or cup what ever. Was always falling. Could not remember why.

Started having full blown seizures. Eyes rolled to back of head. Slurred like a drunk, walked like a drunk, would loose memory, lost a whole day--considered amnesia. Had a seizure, went into a coma. Called in family to tell me gd'by. I came back.

I continued to vomit after eating meals. It would feel like bricks were forming in my stomach. Food would come up. Sometimes food would come up next morning not even processed. Spent thousands exploring food allergies and other reasons for the causes. was not slow gut.

Had hives, welts (have you ever seen strip welts?), itching, insane lots of itching for days or weeks at a time. Doctor would give me shots to stop.

Became gluten intolerant --was quite evident. Would change my personality. Had genetic test. Not celiac. But because of final diagnosis, I do have to stay gluten free, it helps.

My urine can have abnormal odors. So can my body.

I have deafness --comprehension even though not physically deaf. I have ringing in the ears constantly.

I have hypothyroidism. And yes to make some happy, I have had low B12, magnesium, calcium, manganese, ATP, glutathione, cortisols, problems with pituitary but these are all only symptoms of the root cause that broke them. Now I sweat profusely.

I have osteopenia as well as osteoporosis, arthritis, and herniated discs in spine.

I have eye problems, pain behind eyes, eye aches, gray veils, sparkles, blurry vision, I see golden rings, color flashes, and see letters falling like down a computer screen.

I have barretts disease.

As of last year I had the really bad seizure with coma. I now have cognitive problems. Including word choice, memory loss, word meaning, reading and writing issues, I can't see misspelled words or can't remember how to spell; personality disorders of anger or apathy --don't play well with others. Absolutely hard headed, don't realize I may have made a mistake --my brain is telling me I did it right but I really did not. Like reciting numbers etc.

I can go days with seizures, jerks and twitches. I sleep a lot too. Could be related to the depression or root cause. Who cares. Not really important. At this point I will not be president of the US.

What do I have? Am I chronic Fatigue, Tick plagued, Microwaved all that and more? Seriously It took from age 21 until age 49 to become fully disabled. All of the problems became worse and worse. I will say that I was using this site in its OLD format and combining my symptoms lead me to a possible diagnosis. I searched and found some medical cases like mine. Women ten years older than me. They were autopsy cases. That university has since then closed backdoor access to their computer system. Because I had their diagnosis, I took that to doctors to finally get my diagnosis.

Reply Flag this Discussion

2 Replies:

  • To those who wonder, I backed into this at the time starting from celiac and ending up at metabolic disorders to urea cycle disorders to Ornithine Transcarbamylase Dificiency. This genetic disorder can be symptomatic at birth or show up days or years later after such things as severe infections, accidents that damage the liver, after childbirth for the woman, or out of the blue you can start having one or more of the symptoms. The most dangerous is the lethargy and falling asleep and can't wake up. You go into coma and die. What happens is that your body cannot process protein because of problems with the urea cycle to get rid of urea. All protein no matter from meat or plant sources causes a urea of ammonia. If the body does not get rid of it, it can cause seizures, mild or severe brain damage, and death.Sadly some adults are not correctly diagnosed until they go in to hospital and die. Many babies are diagnosed at birth because of complications. In the US not all states test for this disorder or other similar disorders that can kill the baby. Many countries do not test. There are some new in vitro tests out. I know of a lady that is deciding now whether to test or not in a pregnancy, she has lost other children. The United States researchers are working with other countries to try to get testing and medicine to those sites. I know of one country where several children in the region have brain damage and seizures, the country will not allow the medication in that will help reduce and manage the ammonia levels in their bodies. I can't imagine how those parents feel. For some reason this disorder does not like to be alone. It wants company in its destruction. It harms the body at the mitochondrial level of the liver and muscles, including the heart, and brain. Some children have cerabel palsey. This disorder damages the villi on one side instead of two like celiac. Right now there are not many older living people, because there was not medicine to manage and something I think seems to go wrong. And research was focusing on the children --to keep them alive. Here Mommy Cat is where because of the weakened mitochondrial problems and x-chromosome issues I believe the suspect mycoplasma stuff may happily join in the DNA soup bowl of the body. Researchers of other areas know evironmental, bacterial and viral can switch things on and off on our chromosomes. Thus the mitochodrial disorders, such as the urea cycle disorders are so smart, they keep creating new mutations in family lines created by happenstance or grand design. I bring all this to light, because I personally believe more women may be out there and are symptomatic. It is hidden under patients who have multiple problems, not those with just one. Long term they will have fibromyalgia, thyroid problems, may not be able to lose weight, only have miscarriages usually within the first trimester, will have seizures and cognitive problems, usually will have blood pressure problems (high ammonia will deplete oxygen), you may be depressed or may have a confrontational personality --beligerant. But everything else has to be ruled out first. Many have the sleep apnea, not from weight, but somehow tied to the disorder. Also persons who have severe reactions to the drug Valproate may have the urea cycle disorder --Ornithine Transcabamylase Dificiency. This is a marker for the disorder. For some reason Valproate may cause extreme reactions such as halucinations, zombie like person, rages, or raise the blood plasma ammonia sufficiently to coma. In this case Males are at the extreme risk and Females second at risk for severe damage. Recommend if you have such a severe reaction you contact the doctor who is giving it to you and seek medical treatment and also seek a metabolic specialist and inform them of the ocurrence and ask for follow on urea cycle disorder. (They gave me this for my seizures I swung from a raging raving lunatic to a glazy eyed zombie through three days. Third day we quit the medicine ourselves, but did not know at that time what it meant. Until 2 years later.) There are meds to reduce the ammonia and reroute it out of your body.You eat a low protein dietYou must be careful with exercise and sickness so you do not catabolize your muscles, heart, and brain. Don't fast.You take meds for thyroid, seizure control, migraine control and other meds if the disorder had caused major damage somewhere. I do have to take meds to sleep. My brain won't slow down.I also use a cpap machine for sleep apnea.Then the big surprise is that depending on which amino acid your body is not making correctly --you have to take amino acid supplementsI take citrullineL-carnitineTO protect my heart Coq10To protect my nerves Active B-6--this stops the restless leg syndromMust take extra full span of B stress tables on top of special full spectrum multivitamins that are vegetarian, allergy and gluten free.I have to take extra calcium, magnesium, and potasiumThere are more supplements. Basically I have to keep stuffing in my body since much does not get through sometimes. It is a hit and miss proposition. Which explains osteoarthritis, disc and spinal problems as well as muscle cramps, migraines because the brain is screaming for energy and not getting it --when the body is low, it steals it from the brain.Avoid gluten, gluten is protein.I drink black cherry juice for gout like symptoms --I learned from DieticianTo help the fatty liver, I juice a special drink with beets, apples, carrots, celery, parsley. Absolutely great for anyone with fatty liver.There are lopro foods available.FYI The atkins diet and protein shakes almost killed me. Ended up in hospital very ill and noone could figure out why. Doctors never ran an ammonia test because I was not a child. Right now all doctors currently in practice have been taught this is a children's disease. It is not. You as an adult may have it as a genetic disorder and never know it until a crisis occurs. I hope you don't. To read more about it. Google urea cycle disorders and read the information on wrong diagnosis. http://rarediseasesnetwork.epi.usf.edu/ucdc/documents/ucdreview.pdf http://www.emedicine.com/ped/TOPIC2744.HTM http://ghr.nlm.nih.gov/condition=ornithinetranscarbamylasedeficiency http://www.ncbi.nlm.nih.gov/entrez/dispomim.cgi?id=311250 Hope I did not bore too many people. If I save one life adult or baby, then I came out of the coma for the right thing. :)
    Abbydoodle 138 Replies Flag this Response
  • Vitamin A is essential to keep skin's elasticity, prevent dryness, wrinkles and aging of the skin. A person deficient in vitamin A will have flakiness, itching and possibly pimples. Vitamin A can be found in meat, milk, cheese, eggs, spinach, carrots, squash and broccoli.========================================Vitamins for Skin & Hair
    megous0001 1 Replies
    • December 2, 2010
    • 08:40 AM
    • 0
    Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.