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Avatar universal

HELP#MacroMess

Well i have had symptoms of pit tumor for 14 years. I was FINALLY told "you have two masses in the fossa, one we think is Rathkes Cleft the other a pit tumor of sorts both at around 13mm. I have been under the care of a neurologist and had many scans & tests and  OTHER  IMAGING. IN '02 experienced"symptoms to mimick stroke" Many tests MRI being one then a spinal tap to check for hemmorage. I was told i had a bad migrain. Ive had 3 migrains and that was not one, wth? Saw neuro from 2002(for optical Neuralgia) for about 2.5 years cause I KEPT HAVING HEADACHES assoc. with eye pain i had injections of marcain leaving me with worse headaches, oh and my neuro had narcolepsy (needle only go under skin,it not hit your vein or nerve,no worry only tiny needle!?)...ANYWAY in 2011 I started having seizures on top of complete hysterectomy in '08(supposed to be partial but as B wud say "i woke up like this"for abnormal cancer cell growth and endometriosis!? After the first seizure i was hospitalised for 2week then followed up w Neuro (not narcoleptic)immidiently! Had STRANGE SYMPTOMS...lost time passing out seizures & lately  lactating being, FACE PAIN like broken nose,throbbing inside thighs, one large breast, wierd lesions/nodules near joints and ribcage,nausea,shakes,30lb.weight loss in 6mo.ect.ect. was told by Neuro that all blood work looked great and past mris g2go..."it's just really bad migraines"lets give u botox and see, after awhile i started explaining I did not think it was helping and I discovered painful lump(s) on lumbar area and had been to rheumatologist who said neuro. had to go to er few times in 1 month and the visit before my GALLBLADDER was removed the doc said diagnose "pt says something is wrong with her, psychosis suspected"...1 week later wud be me in VIA EMT to er AGAIN to have my GALLBLADDER removed w/ one incision and  row bar, after given nitroglycerin? My PCP wouldn't give me referrals so that happened, she is no longer my Dr.! So now I am here at home w/ SAME SYMPTOMS and then some. Last night I moved a way that threw my ribs out and electrify pain from back of head down spine. I lost my vision for few and way BLURRY now. I'm not getting much help cause I have NO ACCUTE problems to b admitted for (just like my gallbladder was ok as well...hmmm)? I don't know where to go or call PCP said waiting on approvals for insurance....I have 2 boys(14&11)& my husband is at a lost for words...it bad. My youngest cries when he Iis around me because he thinks mommy is going to die even though we readily assure him the power of Jesus. We just lost my dad 4/29/15 In a matter of 6 weeks to cancer that had metastasized, he drove to er that day because the VA clinic wudnt look at his hip. cancer covered 96% of his body. Insurance won't give referrals and hospital won't take you for NOTHING! I am worried that I have hemorage or rupture of sort. My left side is PAINED and left eye is red. At a loss for words but I keep faith and hold my head as high as I can til so dizzy I vomit. PLEASE SOMEONE HELP ME?!
2 Responses
18015750 tn?1462374099
I just Reid all of your message I'm getting very Similar things all my muscles are throbbing my eye vision is terrible I'm scared if a brain tumour I've had a MRI and a CT scan they were clear but I've started to feel funny straight after. U should get ur doctor to reffer u to get a MRI done just incase it's something serious like a brain tumour. U need to get it sorted asap I'm asking for another MRI I'm so scared im only 21. Here if you need to talk comfort helps
Avatar universal
COMMUNITY LEADER
I am a fellow patient and I will try to help you as much as I can.
First, you need to find a different doctor to treat the pituitary side of things. Neuro docs can't treat pituitary as they simply don't have the training. They can't do the testing and cannot interpret the tests properly. You need to find a large hospital or university and get to a pituitary center at one of them. Call around or check websites that have doc lists. Get copies of everything, all MRI's all tests and reports. Read them. You won't understand at first but it will come in time.

It is very normal to be scared out of your mind in the beginning... I was as well! It is scary! So it just takes a bit of time, some learning, a good (excellent) doctor and a super experienced surgeon and we should get you in better shape.

Pituitary tumors are kinda a forever thing so you will be monitoring and managing hormones (maybe, maybe not) so it all depends on the skill of your surgeon so get the best and the way your tumor sits (no control on that one).

I am in and out as I feel eh still... Still recovering a bit...
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