Aa
im done.....im finished.....
**** doctors i give up. 2 years ive been fighting for a diagnosis. i diagnosed myself 2 years ago with a brain tumor, then my mri said i had a 2mm one. then i go and get another mri 1.5 years later and they say its not there...so i bring the films to the neuro endo and the neuro endo says it is there. soo i contact the facilty that says its not there, and they call me and trll me that the neuro endo agrees with them.
meanwhile i have symptoms everyday and feel like ****.
every symptom under the sun.
im 21 and feel like im 90.
my primary caare is the only doctor who truly believes in me, she wants me to go to research clinic like nih, but how can they accept me with this new mri that isnt showing my tumor that i know is there.
also how can the ffreaking neuro endo call herself an expert and send me away with a cortisol an cretinine out of the normal range. cortisol and may be a symptom of voetraining but they are also a symptom of cushings
im gonna have to accept that ill have to be like this for life. everyday my vision gets more blurry, my jaw hurts more, my joints hurt more, my headaches and appettie get worse, my fingers and toes hurt more, my thinking and motor skills deteriorate more,my insides stab more, and there' nothing my primary can do shes just one person.
meanwhile i have symptoms everyday and feel like ****.
every symptom under the sun.
im 21 and feel like im 90.
my primary caare is the only doctor who truly believes in me, she wants me to go to research clinic like nih, but how can they accept me with this new mri that isnt showing my tumor that i know is there.
also how can the ffreaking neuro endo call herself an expert and send me away with a cortisol an cretinine out of the normal range. cortisol and may be a symptom of voetraining but they are also a symptom of cushings
im gonna have to accept that ill have to be like this for life. everyday my vision gets more blurry, my jaw hurts more, my joints hurt more, my headaches and appettie get worse, my fingers and toes hurt more, my thinking and motor skills deteriorate more,my insides stab more, and there' nothing my primary can do shes just one person.
Not a clue - never got anything read there. I did see an endo there for a while. Was told I was an over eater in denial. Never sent for MRI.
i might participate in a 7t mri study at nyu. i called them on thursday and asked if they were looking for people, and they took my name/phone number although i havent got calls from them
Having been to the NIH if you go there they will do a lot of their own testing. I wouldn't worry about doing more testing. Once your doctor applies for you to be seen at the NIH (this is even if they accept you as a patient, not everyone is) they will tell your doctor what they want sent to them. This won't be your decision to make; it will only be left up to the doctors. If you do go....have fun: we absolutely hated the 3 weeks our daughter was admitted there.
Dex will interfere with the other tests. But if you have done it once, I would not repeat. The other tests you can do together. Urines can be done anytime - dropped off.
last time i did the cortisol test i did the 24 hour urine. i was thinking of ust asking her to repeat that,as well as the dex maybe. plus i need a vitamin d test anyway, ive been taking 10-15 units a day and wanna make sure my levels not too high now.
so i should get all 3 tests at the same time? urine saliva and blood??
i can ask for that i suppose. i know she wants to do everything to help me get in there, an if not there, somewhere i can be evaluated further.
so i should get all 3 tests at the same time? urine saliva and blood??
i can ask for that i suppose. i know she wants to do everything to help me get in there, an if not there, somewhere i can be evaluated further.
If your primary will do cortisol tests, yes - but it has to be urine, saliva and blood IMHO. She may now know how to interpret, but she can order. More testing is better. A dex test would be fine - just make sure it is done correctly. There are several types - low dose etc. - you can look them up. Make sure you take the dex at the right time and get the draws at the right time.
yeah sorry for the rants. i think i might do that, or ill just submit what i have to n ih. im making an appoitnment with my primary to discuss. do u think asking for a repeat cortisol test to submit to nih would be helpful? or that dex test you described?
w/o this forum id prob be ion a corner 24/7 talking to myself and fidgeting....thining i was nuts lol.
w/o this forum id prob be ion a corner 24/7 talking to myself and fidgeting....thining i was nuts lol.
I think we all go through low periods - I did too when I was getting diagnosed. Perhaps a break of a few months will help you and then you can go back at it with renewed energy.
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