very very strange

[clintnkari]

ok are you ready for this one? I am a 29 year old female and for the past two years i have had extreme abdominal pain at one point i was in the emergency room weekly, where they did 7 cat scans ultra sounds, colonoscapy, stomache scope and everything eles. everything was normal so they decided to take out my gallbladder, that didnt help. ok so when they did one cat scan they said my spleen was swollen but it was normal in the next, also white blood cells sometimes elevated but not always. i also have fuzzy areas of sclerosis through my thoratic and lumbar spine, have had 3 nucleur medicine bone scans and have found no lesions or tumors...it has been suggested to be a bone marrow infiltraive process, but i have had it for 2 yeasr now with very slow changes nothing significant. i also have black watery nipple discharge spontanious, left side only, biopsy normal.
and my blood sugar occasionally spikes but tests show normal (no diabeties). extreme fattigue for the past few months, muscle twitching and cramps. dizzy spells. burning sensation in hands and feet. acne. hormone levels fine , no inflamitory diseases. can anyone help my doctor is at a complete loss. any ideas. i think if it were lukemia or cancer i would be sicker or dying by now, so i am hoping for a direction to take.

[clintnkari]

just an update i saw my doctor yesterday and for the first time in three years he gave me a suggestion that wasnt something extremely terrible. for the past three years everytime i see a doctor they say "you have cancer" then 2 weeks later they say oops no you dont. i have been seeing this new doctor for a few weeks now wich i a suggestion to anyone with undiagnosed symptoms,  and he actually listened to me for once after a massive look at everything in detail 5 hour bone scan he has decided no i dont have cancer...yay!! his idea covers every symptom i have had (except the collar bone)  and its so simple that it makes me angry no one ever thought of this!!! he believes that i have endometriosis so siever that it has attached to my spine and many other organs, i know thats terrible to other people but to me thats very good news after the things they have told me they thought it was so iam happy. i hvae tests monday to confirm but my doctor told me he would bet money on it so iam excited to finally be done!!!

[clintnkari]

my bone scan took 3 hours longer than usual, i showed them the collar bone and they did 3 extra scans of it plus did the whole body 2x and extra of other areas so iam hopeful that will give me some answers but not too hopeful cuz they never do. now i just have to wait for my doctor to get the report .

[clintnkari]

ok to answer your questions i take b12 injections (1000 m) every 2 weeks and have for the past year. i take levoxly .75 everyday for thyroid and have for most of my life my b12 and thyroid levels are perfect with medication. blood sugars tested at home and by doctor, they only occasionally spike when iam sick and the ac1 test normal and glucose tolerance test normal. cramping and spasms yes badly under ribs and occasionally in legs blood pressure good unless iam in pain usually 120/70 . other gastro symptoms are mild illeus they explained to me that my body is trying to fight something so food digestion will occasionally stop, soemtimes i wake up at night in extreme pain between ribs i had gallbladder removed and they looked at everything while they were in there said normal did a stomache scope and colonoscapy normal biopsied part of my intestines colon and stomache, normal. breast biopsies 1 was a mass, and 1 was breast and nipple tissue, normal. tehy always think i hasve cancer or lukemia when they see my bones and my white cell count but they cant find where cancer originated from and complete blood count rules out  lukemia. now my collar bone is sticking out on the right side i dont know what to think of that, i have a nucleur medicine bone scan again today this is like my 4th and they payed alot of attention to my collar bone they did like 5 extra scans of it so mabey that will give me some answers, but you know how that goes they wont tell you anything, have to wait for doctor, iam tired of being told i have cancer then oops no you dont. i think if it were cancer i would allready be dead its been over 2 years no answeres, syptoms came a few at a time abdominal pain first, then  spleen swelled then went back to normal, then blood sugar then stuff on bones then wierd body sensations then fatuige then dizzy spells and all around ill feeling. then kidney infections, now collarbone man iam having a rough time!!!

[darlingdivatx]

When they biopsied your breast, what did they biopsy exactly??? Was it breast tissue or the black discharge or both? Have you considered you may be dealing with more than one entity? I say that, partly because I think that may the case for me, but for you it might apply as well. So many of your symptoms are known to be associated with low b12. Are you still taking the injections? How long were you on them if not? What about cramping or spasms. Do you get them anywhere? How is your blood pressure? High or low? Do you have or get fevers? You mentioned abdominal pain.;What about gastro symptoms? Do you have any of those? What do the docs make of your abnormal white count? Okay, last question for now...you say your blood sugar goes up but no diabetes? How do you know it goes up? Lab tests? Do you check it yourself? Oh...and how did your symptoms present? Gradually or all at once?

Sorry for all the questions. When I first read your post my initial thought was anemia. You probably already know there are many different types.

[clintnkari]

thank you so much for responding. to answer your questions yes very intolerant to heat and cold, hands and feet always icy cold. i also get a strange burning sensation. i have seen 3 diffrent primary care providers, 2 diffrent oncologists, a gastrointestanal specialist an encornologist (or how every you say , the doctor to check your blood like thyroid) a hemo-oncologist i have had a few bone scans and having another tommarow. they did a complete blood count on me, my b-12 dropped 200 point below normal making me anemic but the injections dont seem to help with any symptoms, i have has 2 breast biopsies both normal. in the past year i have been told that i have metastatic disease, lukemia, cystic mastitosis, and a few others but when they do the tests they say oops we made a mistake. iam at a total loss... my thyroid is low (been on medication to balance it out for 14 years) and thats one place they havent checked and my collarbone is starting to stick out on the right side, so iam going to talk to my doctor about that. we are just both at a loss. the fatiuge is so bad i cant even take a shower with out having to lie down afterwards, and the "fuzzy areas of sclerosis" on my bones scares me, also the pain wow it really hurts like hunched over teary eyed screaming hurt. i am so tired of doctors treating me like a hypo-condriac, i never even use to go to the doctor!!!!! they always seem to brush me off and say well your blood work is fine instead of even attempting to help, i am seeing a new doctor who actually listens to me and who i believe is trying to help i just dont know anymore.

[darlingdivatx]

Have you only seen just the one doc??? If no, what other docs have evaluated you? What about your electrolytes, like potassium and calcium? I would see a hematologist and a gastro doc. You could have something like a budd chiari to a hemolytic anemia. Have they biopsied the discharge from your breast? They should if haven't.

[medicmommy]

Hello!
I was wondering if you have any problems with intolerance to cold, blue hands/ feet when exposed to cool temps...