Hello everyone- I am new to the group and am having a bad time right now, so I was hoping to pick the brains of all the forum users.
For the past 4 years, I have been through many tests and seen many doctors: general practitioners, gynecologists, rheumatologists, dermatologists, endocrinologists, GI's... everyone in the end gives me over to another "ologist" with no definitive diagnosis. Several things keep coming up in conversations with different doctors in relation to different symptoms: Lupus, thyroid and possible pituitary gland tumor.
Here is my list of symptoms- please let me know if any of you have this combination of symptoms or if you have any advice for me. Please note that these are not every day symptoms, they come and go... sometimes several symptoms at once, sometimes one at a time, sometimes for days or weeks, sometimes one day and it is gone. I tend to have periods of good health and periods of bad health where everything seems to go wrong at once.
* constipation, bloating, sever abdominal cramping
* pain in my stomach that feels like a combination of being punched in the stomach (muscles will not relax!) and hunger
* migraines (until the last one it was without aura, now it seems to be with aura. Before and during the last one I was very dizzy, disconnected, weak, nauseous and disoriented. My face became very swollen on the right side with the last one- the eye was almost swollen completely shut. They are becoming more frequent. Can't take Immitrex, due to the extreme tightening of my throat, but the doctor gave me Butalbital which at least takes the edge off.)
* occasional numbness in left side of face
* always very thirsty- drink water all day long
* nose sores in both nostrils
* mouth sores (cold and canker sores as well as an occasional swollen taste bud)
* periods of depression
* low grade fevers from time to time with no explanation
* white coating on my tongue- always
*occasional metallic or sour taste that won't go away
* spots that come and go on my tonsils- not strep or infection according to PCP and ear, nose and throat dr
* swollen glands in my throat even when i am not sick
* hair loss!
* nails peel like bananas
* "body dandruff" - my skin flakes off like dandruff... every time I touch my skin during one of these times it snows! My clothes and sheets are covered in it when this happens.
* went 6 months with no period- even hormone given by my gyno did not initiate my menstrual cycle, she ended up putting me back on the pill (i am now off 8 months as per my endocrinologist)
* now that I am having a menstrual cycle- it only lasts a day or two tops
* left breast created a large amount of milk one time- prolactin tested ok, but T3 and T4 were out of whack
* joint pain and/or stiffness
* feet and ankles are always stiff and swollen in the morning
* numbness in pinky and ring finger of left hand (tested for carpal tunnel- dr says it is nerve damage instead)
* recurring YI's
* 3 kidney infections - one led to a systemic blood infection, the others were sever enough to cause fevers as high as 105 and require hospitalization
* severe attacks of gall bladder pain- no stones per ultrasound
* feet are always very cold- sometimes hands and nose are cold as well, even in the middle of summer.
* weight loss- i actually have dropped 5 pounds in a week and was down to 100 lbs. The pounds always come back eventually.
* periods of no appetite with rare bouts of ravenousness
* memory problems/cloudiness
* leukocytoclastic angiitis (inflammation of the blood vessels in my arms and legs- diagnosed after a biopsy. Possible autoimmune response as per dermatologist.)
* loss of libido
*diagnosed with a case of thyroiditis a year ago- thryoid was sore to the touch and slightly inflamed. I get reoccurances of this sensation from time to time and it is most usually coincides with other symptoms like fatigue
* Psoriasis. patchy, scaly rash that comes and goes on trunk, arms and legs.
* hyper-pigmentation on my face- dermatologist gave me bleaching cream which helps, but it always comes back as soon as i go in the sun even with sunblock on. (note: I am not on the birth control pill, have very pale skin and have never been pregnant, so i do not think it is melasma)
* sensitivity to cold - i am always cold and wear a sweater even in the summer- and i live in Georgia!
* headache if I lay down too long
* headache where back of head meets neck
* have had attacks of what i call "Mickey Mouse hands"- my hands feel very full and stiff as though they were inflated. Veins are very evident, but there is no visible swelling. Rheumatologist is at a loss as to the cause.
* lips are always dry and eyes are sometimes very dry
* After a 9-1-1 call, I was hospitalized on Halloween for severe dehydration after a very sudden (I was literally in the middle of putting on my makeup) attack of intense vomiting and diarrhea. Hospital physician said it could be gall bladder or infection. Rheumatologist thought it might be Parvo virus, but I tested negative for that. I was too weak to even walk on my own for about one week.
I wont list all the gazillion tests I have had, but here are a few:
* my ANA comes back equivocal (how i hate that word) more times than not
* tested negative for Celiac
* colonoscopy showed no signs of Crohn's disease, IBD, cancer, diverticulitis, etc. Doctor fell back on IBS as a possible cause for my abdominal issues.
* endoscopy/biopsy showed only a slight case of gastritis
* sometimes my T3, T4 and TSH levels are off- other times they are fine
* I have had multiple ultrasounds of my kidneys, gall bladder, uterus, ovaries, etc. nothing out of the ordinary shows up
* Appendix was removed in 1993
* The only medications i am on daily is Vitaplex ( a prescription vitamin), Miralax (a laxative) and Protinix for my gastritis. I also take daily: Biotin for my hair loss, Flaxseed oil for my IBS, papaya enzyme to help with digestion after each meal and magnesium to help with peristalsis. I take on a less than daily basis: Gas-X for my bloating, Butalbital for my headaches, Klonopin for my bouts of insomnia and anxiety.
I don't consume these because they kill my intestines: :eek:
Red meat or pork
Raw fruits or veggies
ChocolateI exercise when I am not suffering from fatigue, drink on very rare occasion and I do not smoke.
My mother has Crohn's disease, Rheumatoid arthritis, migraines.
My father's mother had Crohn's disease.
My sister has endometriosis.Ok- my apologies for the long post- I hope someone can help me! thank you all so very much for even looking at my post! Blessings to you all! :)
Recognize the risks associated with Crohn’s disease.
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