Aa
ive finally lost hope on being normal
its been a year since ive goten an mri, or seen any type of doctors, because im sick of all of them saying im nuts. i was just searching for doctors on vitals.com,and iwas bored, so i checked up all of my old USELESS DOCTORS, and my neurosurgeon and endo who both were useless are rated as castle connely top doctors.
i know people around the world post on this site, and most come into contact with the same doctors as me. ive had these problems since i was 18, i turn 20.5 on april 15. i feel like im dying and i dont know what else to do now. my tests come back normal or low normal(which my doctors consider normal) and my mris come back as a 2mm tumor(havent had an mri since last year which was my first).
i dont know where to turn. doctors in new jersey are a bust.what makes it worse, iss that any decent doctors i find rated high by patients are not covered in my plan.
i cant go on living like this anymore i feel like crying and i often do, and my parents dont believe me, they beleive the doctors.
i know people around the world post on this site, and most come into contact with the same doctors as me. ive had these problems since i was 18, i turn 20.5 on april 15. i feel like im dying and i dont know what else to do now. my tests come back normal or low normal(which my doctors consider normal) and my mris come back as a 2mm tumor(havent had an mri since last year which was my first).
i dont know where to turn. doctors in new jersey are a bust.what makes it worse, iss that any decent doctors i find rated high by patients are not covered in my plan.
i cant go on living like this anymore i feel like crying and i often do, and my parents dont believe me, they beleive the doctors.
I about to give up as well. Mine is was 17mm 8 months ago. It was 13mm in 2006. Cavernous haemangioma. It's a not a tumour, it more like a anurysm, but where an anurysm has a major artery/vein/blood vessal passing through it, an cavernous haemangioma has a tiny little blood vessal and it grows very very slowly.
I've been having symptoms of paralysis for about 8 months on and off, concious the whole time, focal seziure maybe?
I've been in a mental hospital with a conversion disorder diagnosis, and told never to call the ambulance and thrown out of doctor's sugeries and told not to come back, I've gone to the hospital because I was scared about a change in the paralysis only to be told to go away where I collapse in the gutter for about half an hour as the doctor drove past on the way home in his mercedes.
The only hope I cling to at the moment is I have found some doctors that a) can see me for more than 15 minutes, b) bulk bill (I'm in Australia) and c) are curious about my symptoms and say it does not fit the pattern of conversion disorder.
Conversion disorder you have to know something exists in order to mimic it. I read about focal seizures ten minutes ago. Because of the persistence of the doctors that it's psychiatric, after moving back home I decided to see my old psychiatrist.
He is brilliant. Eccentric, old, kinda slow and deliberate in his thoughts. But the one thing that sticks in my mind is me walking into his office in tears asking "When is it time to give up and accept it's all in my head?" and I walked out an hour and a half later and he said "Now is not the time to give up. We'll keep looking."
This is from a psychiatrist.
So if you get pushed into the it's all in your head zone, remember that not all psychiatrists are pill pushers.
Have hope.
Now is not the time to give up.
I've been having symptoms of paralysis for about 8 months on and off, concious the whole time, focal seziure maybe?
I've been in a mental hospital with a conversion disorder diagnosis, and told never to call the ambulance and thrown out of doctor's sugeries and told not to come back, I've gone to the hospital because I was scared about a change in the paralysis only to be told to go away where I collapse in the gutter for about half an hour as the doctor drove past on the way home in his mercedes.
The only hope I cling to at the moment is I have found some doctors that a) can see me for more than 15 minutes, b) bulk bill (I'm in Australia) and c) are curious about my symptoms and say it does not fit the pattern of conversion disorder.
Conversion disorder you have to know something exists in order to mimic it. I read about focal seizures ten minutes ago. Because of the persistence of the doctors that it's psychiatric, after moving back home I decided to see my old psychiatrist.
He is brilliant. Eccentric, old, kinda slow and deliberate in his thoughts. But the one thing that sticks in my mind is me walking into his office in tears asking "When is it time to give up and accept it's all in my head?" and I walked out an hour and a half later and he said "Now is not the time to give up. We'll keep looking."
This is from a psychiatrist.
So if you get pushed into the it's all in your head zone, remember that not all psychiatrists are pill pushers.
Have hope.
Now is not the time to give up.
i just read my dad your story, and hopefully it sank into him. my dad and i fight a lot, because i insist that i feel like crud and i get aggressive about it. he doesn't wan t to drive with me all the way to VA, but perhaps there's a train or something that puts us close to uva?
im kind of scared to go to uva. you claim they are unlike these bad doctors. if i go to them and thy still dont help me, that will basically mean hope of finding a good doctor is lost!
im kind of scared to go to uva. you claim they are unlike these bad doctors. if i go to them and thy still dont help me, that will basically mean hope of finding a good doctor is lost!
thanks but ive had many fights with my dad over this, he doesnt seem to be concerned.
i have an appointment with a doc here,ill atleast get my mri here, then see how things go.
i dont know what the doctors in uva will do about travel though? and i dont even know what to ask ha. i definately want to go there, but i dont know how i could get there. my dad drove 2 hours to get himself colon surgery,so it disgusts me he doesnt take this seriously, ive shown him the forum he thinks you guys are quacks..he doesnt realize WE are the only people who know the truth, we are the bright lights hahaha./
why arent they doing surgery on your tumor? pit surgery is just a tube up the nose to suck that sucker out. seems like the most logical thing for me.
btw the doc said my vitamin d was low, idk if that causes these symptoms? i might have a a learning disability, but i had a 4.0 in school for a while. i failed this semester and jsut dropped 9 credits of courses cause i could care less now. i felt like i had good grades but nothing sank into my mind.
i have an appointment with a doc here,ill atleast get my mri here, then see how things go.
i dont know what the doctors in uva will do about travel though? and i dont even know what to ask ha. i definately want to go there, but i dont know how i could get there. my dad drove 2 hours to get himself colon surgery,so it disgusts me he doesnt take this seriously, ive shown him the forum he thinks you guys are quacks..he doesnt realize WE are the only people who know the truth, we are the bright lights hahaha./
why arent they doing surgery on your tumor? pit surgery is just a tube up the nose to suck that sucker out. seems like the most logical thing for me.
btw the doc said my vitamin d was low, idk if that causes these symptoms? i might have a a learning disability, but i had a 4.0 in school for a while. i failed this semester and jsut dropped 9 credits of courses cause i could care less now. i felt like i had good grades but nothing sank into my mind.
I see Dr. Jane jr. He is in the kids ward but I will be transfered to his father in a few years. I don't know which one you could go see. I started with him when I was around 15 so I was still a minor then. If you have an odd spot on your MRI your family and your doctors should be concerned. I would talk to your father. My cousin tested like this. She tested normal for everything but had a mass on her MRI. She was fine for 10 years and then randomly one day died because it grew. No warning. No new symptom. She was 27 when she died. Your welcome to use that story to show him how serious this could be. I think thats why my parents take my case so seriously.
Plus a tumor doesn't just effect the life span of a person. It sounds like you probably have a learning disability too... Its nothing to be ashamed of. I have one too. But you need to be tested. Disorientation is a strong part of side effects too. Like I'm not suppose to drive much at night ^^' still do though... They have me on medication for migraines, dizziness, weakness, and i had surgery for double vision so there is a lot you can do.
ok heres what I would do if I were you...
Make a list of symptoms... disorientation, forgetfulness, lack of attention, migraines, any pain on one side of the body or weakness... stuff like that.
Talk to your father about this... like sit down situation.
Call the doctors at UVA (they might have a solution to your travel as well. they have a lot of people come in with pretty horrible conditions)
Be sure to tell your dad that UVA is one of the best medical institutes. The have top doctors in neuro and its better to be safe then sorry.
And you mentions were you were from in the post ^^
I really wish you well.
Plus a tumor doesn't just effect the life span of a person. It sounds like you probably have a learning disability too... Its nothing to be ashamed of. I have one too. But you need to be tested. Disorientation is a strong part of side effects too. Like I'm not suppose to drive much at night ^^' still do though... They have me on medication for migraines, dizziness, weakness, and i had surgery for double vision so there is a lot you can do.
ok heres what I would do if I were you...
Make a list of symptoms... disorientation, forgetfulness, lack of attention, migraines, any pain on one side of the body or weakness... stuff like that.
Talk to your father about this... like sit down situation.
Call the doctors at UVA (they might have a solution to your travel as well. they have a lot of people come in with pretty horrible conditions)
Be sure to tell your dad that UVA is one of the best medical institutes. The have top doctors in neuro and its better to be safe then sorry.
And you mentions were you were from in the post ^^
I really wish you well.
hey ,awesome story!!! which doctor do you see? there are two janes,a father and son. i would love to go to this hospital, but i dont really have a means of getting there. my dad refuses to take me since doctors here say its normal, and im fine, and he thinks these doctors are good enough, and doesnt believe i feel badly. i have a car, but i hate driving long distances, and this tumor makes me have trouble with directions or maybe thats an excusee muwahhha/
btw howd you know where i live? did i mention it..sorry im forgetful.
btw howd you know where i live? did i mention it..sorry im forgetful.
Dr. Faisal Qureshi, in the St. Louis area is an excellent Endocrinoligist. I love the way he works.
Ok so you sort of sound like me so I figured I would chip in a little especially since you live close to me and there are a few doctors that might be able to help you. I have been diagnosed with a brain tumor since I was 9 (I am 21 right now) and it only shows up on MRI. I was put through years of crappy doctors who didn't care about me. I drive very far for my current doctors but it is worth it completely and the hotels give you a discount if your there for medical reasons. I got to UVA. There nero department is amazing. I see Dr. Jane for my neurosurgeon. I will not be having surgery but there are a lot of things they can do for the side effects of the tumor like migraines and such. They have me with a team of 4 doctors each of them has been amazing. And trust me my old doctors went through the "it's all in your head" thing too.
Please at least check this hospital out. Its been a life changer for me. good luck
Please at least check this hospital out. Its been a life changer for me. good luck
You are still articulating pretty well, which is a plus for communicating! You are speaking of situational depression, which I suffer from too sometimes. But wanting to just lay in bed most of the time and talking about giving up is telling people you are seriously depressed, which is not healthy mentally. I too have a brain tumor, along with a host of other medical issues. I know it can be draining.
I know first hand from the past what a serious clinical depression is. Do you really want to live your life in that kind of a funk? Where is the pleasure in that? I'm typically not an advocate anymore of prescription SSRis, I don't like them. That's why, if I may again offer a suggestion- why not try for now, conservative steps you can take with over the counter and dietary items as well as enjoying the beauty of nature and music to try to get you feeling at least a little better than you are now? It won't take away your brain tumor, but it might help you to function a little better. And trying to help others can also help with lifting mood. Also, regarding brain fog- is your B 12 level low?
I know first hand from the past what a serious clinical depression is. Do you really want to live your life in that kind of a funk? Where is the pleasure in that? I'm typically not an advocate anymore of prescription SSRis, I don't like them. That's why, if I may again offer a suggestion- why not try for now, conservative steps you can take with over the counter and dietary items as well as enjoying the beauty of nature and music to try to get you feeling at least a little better than you are now? It won't take away your brain tumor, but it might help you to function a little better. And trying to help others can also help with lifting mood. Also, regarding brain fog- is your B 12 level low?
i am depressed because i have a brain tumor. i am not depressed due to an invalid reaso or chemical imbalance in my brain. uintil i get healthy i will be depressed,and i dont want to supress these feelings, because they re valid. ijust ewant to be healthy.
my problems are huge i have a brain tumor, and no doctors take me seriously. i feel like ill never be healthy or normal.
i am failing school, and cant even comprehend anything anymore i have so much fog.
my problems are huge i have a brain tumor, and no doctors take me seriously. i feel like ill never be healthy or normal.
i am failing school, and cant even comprehend anything anymore i have so much fog.
I am in surgical menopause, thus the nickname Surgimenopause. See PM for answer to your spiritual questions. I can understand losing your dreams... I wanted to be a nurse, got an LVN, but that dream didn't come true for me. I wanted to earn money working and I'm on disability and cannot. I wanted to have babies, but that dream too slipped away. I wanted to be migraine free after I got my hysterectomy, but while there was some improvement I still get them about 5 times a month. At least some of your fog and inability to think to think clearly can be stemming from your thoughts and possibly a brain chemical imbalance (See PM). Fear and depression are robbing you at least in part, I suspect, of clear thought. They can do that to a person.
god has the power to heal us all, and he refuses. why are some people healthy and we are not???
what makes him, give them health and not us? arent we all his equally loved children?
god doesnt like us humans. we live in a fallen world because eve was greedy and took the apple or something. god will not reqard us in heaven because he doesnt like us!
and no you shouldnt have to deal with this in your 30s either. i just worded it that way, so you didnt think i thought you were 20 ha. i actually thought you were older than 30s? your name says menopause?
but yeah my probs started at 18. while all the kids in my school had social lives, and girlfriends, and went to parties i was in bed with headaches. also im failing school right now, and dont know if ill ever get a job. ill probably be homeless due to this. i used to be a 4.0 stude4nt, but i cant think clearly anymore. i have SO MUCH mental fog, and cant comprehend anything anymore!!! also i dont care to try anymore, since i feel awful anyway. who cares if i have a college degree when i feel HORRIBLE??? the most important thing to me is being healthy. id rather work a minimum wage job for the rest of my life, and be in perfect health, rather than be a multi millionaire who inherited a fortune, and doesnt have to work at all, yet is frail like im getting.
what makes him, give them health and not us? arent we all his equally loved children?
god doesnt like us humans. we live in a fallen world because eve was greedy and took the apple or something. god will not reqard us in heaven because he doesnt like us!
and no you shouldnt have to deal with this in your 30s either. i just worded it that way, so you didnt think i thought you were 20 ha. i actually thought you were older than 30s? your name says menopause?
but yeah my probs started at 18. while all the kids in my school had social lives, and girlfriends, and went to parties i was in bed with headaches. also im failing school right now, and dont know if ill ever get a job. ill probably be homeless due to this. i used to be a 4.0 stude4nt, but i cant think clearly anymore. i have SO MUCH mental fog, and cant comprehend anything anymore!!! also i dont care to try anymore, since i feel awful anyway. who cares if i have a college degree when i feel HORRIBLE??? the most important thing to me is being healthy. id rather work a minimum wage job for the rest of my life, and be in perfect health, rather than be a multi millionaire who inherited a fortune, and doesnt have to work at all, yet is frail like im getting.
I don't think you are saying I should now that I'm in my thirties? :0)
God has gone to a lot of trouble to get my attention, don't you think? It's because I am His child and He loves me that He wants me to trust Him completely no matter what. It is only when I realize my entire brokenness, my frail, fragile, fallen and totally helpless state that I come to depend on Him alone. He is my source of joy, strength, peace.
When I get my eyes on my circumstances, I feel like a drowning, depressed woman. But when I look to the One Who knows everything, even down to the number of the hairs on my head, Who numbered all my days when as yet there was not one of them, I realize He is completely in control and will carry me through all the hard times. He is so good! And what I suffer on this earth is so temporary. Life here is so brief. And I have being with Him in heaven in a perfect body to look forward to!
God has gone to a lot of trouble to get my attention, don't you think? It's because I am His child and He loves me that He wants me to trust Him completely no matter what. It is only when I realize my entire brokenness, my frail, fragile, fallen and totally helpless state that I come to depend on Him alone. He is my source of joy, strength, peace.
When I get my eyes on my circumstances, I feel like a drowning, depressed woman. But when I look to the One Who knows everything, even down to the number of the hairs on my head, Who numbered all my days when as yet there was not one of them, I realize He is completely in control and will carry me through all the hard times. He is so good! And what I suffer on this earth is so temporary. Life here is so brief. And I have being with Him in heaven in a perfect body to look forward to!
h9ow has that story made you like jesus? i feel like god hates me.... my life is a mess, at 20 i shouldnt be feeling like this, and neither should you when you were in your twenties.
If it weren't for my Saviour, Jesus Christ, I would be really depressed as well. I do take Sam-E (naturemade brand) and flaxseed oil capsules and magnesium which help with mood, but He is my reason to live. If I didn't take comfort in His love and absolute control, I think I'd probably be insane by now. Maybe you can somehow be encouraged with a sliver of my story?
I used to work- for about ten years. I can't anymore. My pituitary tumor likely had nothing to do with that, it was just one more thing in a long line of trials that are gifts from God to me to help me grow in Him.
I started having chronic migraines in my early twenties. It was a rare day that I didn't have some kind of a headache. I also fell and injured my knee the same year my migraines went chronic and I had to wait about five months before the insurance agreed it was time for surgery. In 1998, a car accident where an uninsured motorist rear-ended me and I hit the car in front of me from the impact, left me neck issues to this day (even after great improvement with about 10 months of physical therapy).
In 2004, I was diagnosed with postural orthostatic tachycardia syndrome (POTS) and also was informed at a time when I could hardly open my mouth, due to my TMJ dysfunction and arthritis (which they discovered), I would have to be on a soft diet for the rest of my life. This was an added dietary restriction to the migraine trigger foods, IBS and GERD ones I already knew about.
It also became routine to have TMJ flare ups with talking or singing for lengthy periods and taking cyclic ibuprofen. As a person who likes to talk and sing, this jaw thing can really be hard on me emotionally. A holtor monitor test last year revealed my heart rate nearly every hour is at some point going above 100 beats per minute. There's very little I can do about my POTS... but little adjustments, like sitting on the edge of my bed for a bit before popping up can help me so I don't feel like I'm about to pass out as my vision goes gray on me. And recently, I was informed that surgery holds no hope for me for my jaw situation, that it could only make things worse.
In 2006, I gave up my dream of ever having a baby when endometriosis issues caused me to have a complete hysterectomy. In 2008, I was diagnosed with interstitial cystitis (IC), which can be very painful at times, and also my pituitary microadenoma. In 2009, I learned more about dietary restrictions for the IC so I had to cut out more things I enjoy. I also recently learned that I now have two hemangiomas on my liver, and the one that was discovered in the past has grown. If it ever gets too large and causes problems, I may have to be referred to a surgeon about it.
Gastrointestinal bleeding caused my iron to drop recently by more than half (at least we think that's what did it) and my ferritin to dip below normal, making me feel very fatigued and worsening my tachycardia, so I'm taking iron now & am suppose to take metamucil and miralax generic combo daily. I was also told to use only sparingly the ibuprofen which I had been frequently taking for TMJ pain & swelling and migraines as well. My kidney function is not in it's prime, but the doctors aren't worried about the amount of protein abnormally showing up in my urine.
Sometimes it has helped me to look at someone else's story to realize I really have a lot to be thankful for. I don't know if my story will help someone or not, but I hope so.
I used to work- for about ten years. I can't anymore. My pituitary tumor likely had nothing to do with that, it was just one more thing in a long line of trials that are gifts from God to me to help me grow in Him.
I started having chronic migraines in my early twenties. It was a rare day that I didn't have some kind of a headache. I also fell and injured my knee the same year my migraines went chronic and I had to wait about five months before the insurance agreed it was time for surgery. In 1998, a car accident where an uninsured motorist rear-ended me and I hit the car in front of me from the impact, left me neck issues to this day (even after great improvement with about 10 months of physical therapy).
In 2004, I was diagnosed with postural orthostatic tachycardia syndrome (POTS) and also was informed at a time when I could hardly open my mouth, due to my TMJ dysfunction and arthritis (which they discovered), I would have to be on a soft diet for the rest of my life. This was an added dietary restriction to the migraine trigger foods, IBS and GERD ones I already knew about.
It also became routine to have TMJ flare ups with talking or singing for lengthy periods and taking cyclic ibuprofen. As a person who likes to talk and sing, this jaw thing can really be hard on me emotionally. A holtor monitor test last year revealed my heart rate nearly every hour is at some point going above 100 beats per minute. There's very little I can do about my POTS... but little adjustments, like sitting on the edge of my bed for a bit before popping up can help me so I don't feel like I'm about to pass out as my vision goes gray on me. And recently, I was informed that surgery holds no hope for me for my jaw situation, that it could only make things worse.
In 2006, I gave up my dream of ever having a baby when endometriosis issues caused me to have a complete hysterectomy. In 2008, I was diagnosed with interstitial cystitis (IC), which can be very painful at times, and also my pituitary microadenoma. In 2009, I learned more about dietary restrictions for the IC so I had to cut out more things I enjoy. I also recently learned that I now have two hemangiomas on my liver, and the one that was discovered in the past has grown. If it ever gets too large and causes problems, I may have to be referred to a surgeon about it.
Gastrointestinal bleeding caused my iron to drop recently by more than half (at least we think that's what did it) and my ferritin to dip below normal, making me feel very fatigued and worsening my tachycardia, so I'm taking iron now & am suppose to take metamucil and miralax generic combo daily. I was also told to use only sparingly the ibuprofen which I had been frequently taking for TMJ pain & swelling and migraines as well. My kidney function is not in it's prime, but the doctors aren't worried about the amount of protein abnormally showing up in my urine.
Sometimes it has helped me to look at someone else's story to realize I really have a lot to be thankful for. I don't know if my story will help someone or not, but I hope so.
the worst thing is , i sm sick everyday with symptoms from the tumor, and today i get as cold.... as if im not sick enough already, now i hve the same symptoms just worse. i told my parents to start coming to the doctors with me, because none of them listen to me, but im scared ill NEVER get help, i cant take it! i stopped going to school even im so depressed.
Correction on something I said earlier- I'm hoping to get an MRI in 18 months from my last one, rather than two years.
i was complaining for 7 years before i got seen to as well, ended up i had cushings disease, which is basically a piturity tumour which by the way didnt show up on an mri, a simple blood test showed cortisone levels were too high all the time as was my blood pressure. i had been sent to see a shrink but i def knew something was wrong and i wasnt going mad, i had my op in november 2002 which was done through my nose and im now in my 8th year and am off my meds, my doc kept putting me off too but it was the nurse at that surgery who sorted me out, look for a blood test and get them to do a full run down, cheers
Your title makes it sound like you have come to accept you've got a health problem that is not going to go away- this sounds like it could be a positive step of adjustment!
The neuroendocrinologist I went to was hours away from where I live and we spent a couple of nights so I could go with family. It was exhausting & I didn't get much in the way of testing. But she felt it was enough that all the t s had been crossed and all the i s dotted. I wouldn't lump everyone in the medical profession as horrible, as I've met some caring folks in that profession, though it might get to that point or very close to it if Obama's plan that congress passed ever gets implemented.
While I haven't found an endocrinologist close by that I can go to (tried a couple), there's this surgeon I saw about what turned out to be liver hemangiomas & costochondritis who says he knows an endocrinologist in a city that's about 70 miles from where I live, so if I have to go to one again, I might try them, if they are still practicing and would take my medicare HMO insurance.
The neuroendocrinologist I went to was hours away from where I live and we spent a couple of nights so I could go with family. It was exhausting & I didn't get much in the way of testing. But she felt it was enough that all the t s had been crossed and all the i s dotted. I wouldn't lump everyone in the medical profession as horrible, as I've met some caring folks in that profession, though it might get to that point or very close to it if Obama's plan that congress passed ever gets implemented.
While I haven't found an endocrinologist close by that I can go to (tried a couple), there's this surgeon I saw about what turned out to be liver hemangiomas & costochondritis who says he knows an endocrinologist in a city that's about 70 miles from where I live, so if I have to go to one again, I might try them, if they are still practicing and would take my medicare HMO insurance.
i honestly dont know what i want at this point. i just want to be alive again, and i havent been alive ion forever...years. im only 20 and feel like crud, im failing in school and dont even know if i will be able to straighten myself out, and at this point idc cause i am not healthy.
last year i requested an mri, because after doing my fair share of research i believed that i had self diagnosed myself correctly. i self diagnosed myself with a brain tumor in the pituitary gland, or possibly a geloma brain tumor. i went for my mri, and told them that i was pretty sure i had a pit tumor, to check that carefully. he said you are probably imagining it, but we will check. the mri results came back and it said i had a PROBABLE 2mm tumor or lesion in the pituitary. this was good enough for me,probable means possible to me. im like awesome, i was correct, and now i can get meds or get it removed and live again. neurologist said im fine and wouldnt help me. i drove an hour and waited 3 hours in a waiting room for a neuro surgeon at robert wood johnson. this guy was so ruie and horrible, and USELESS.
then i waited 8 months for an appointment with a CASTLE CONNELY top doctor in my area. this guy was just as rude as any, and told me he wouldnt help me its all in my head. i started thinking to myself, maybe they are right, maybe this is my imangination. but then i said i know i am not healthy, i know this is real, i knew i had a pit tumor before the mri, and i know for sure ido now. i searched and came upon this forum. i found many others like north48, rump-led and blue who had all been told the same things iwas told, and who also had pit microadenomas. north48 even went to mayo clinc and they refused to help her!
im just tired of this. the medical profession is horrible. ialso have sports injuries and the orthopedic doctors are no better than the brain doctors =p. my xrays came back normal, however i had xrays of the sternum which is a hard place to see. the dotor should have reccomended mris. im thinking ill go get my brain and sternum mried at once i guess although i hate mris they are scary. and its pretty uncomfortable when you are injured.
last year i requested an mri, because after doing my fair share of research i believed that i had self diagnosed myself correctly. i self diagnosed myself with a brain tumor in the pituitary gland, or possibly a geloma brain tumor. i went for my mri, and told them that i was pretty sure i had a pit tumor, to check that carefully. he said you are probably imagining it, but we will check. the mri results came back and it said i had a PROBABLE 2mm tumor or lesion in the pituitary. this was good enough for me,probable means possible to me. im like awesome, i was correct, and now i can get meds or get it removed and live again. neurologist said im fine and wouldnt help me. i drove an hour and waited 3 hours in a waiting room for a neuro surgeon at robert wood johnson. this guy was so ruie and horrible, and USELESS.
then i waited 8 months for an appointment with a CASTLE CONNELY top doctor in my area. this guy was just as rude as any, and told me he wouldnt help me its all in my head. i started thinking to myself, maybe they are right, maybe this is my imangination. but then i said i know i am not healthy, i know this is real, i knew i had a pit tumor before the mri, and i know for sure ido now. i searched and came upon this forum. i found many others like north48, rump-led and blue who had all been told the same things iwas told, and who also had pit microadenomas. north48 even went to mayo clinc and they refused to help her!
im just tired of this. the medical profession is horrible. ialso have sports injuries and the orthopedic doctors are no better than the brain doctors =p. my xrays came back normal, however i had xrays of the sternum which is a hard place to see. the dotor should have reccomended mris. im thinking ill go get my brain and sternum mried at once i guess although i hate mris they are scary. and its pretty uncomfortable when you are injured.
Hey-
I took last year off too. I needed to have time without doctors to just live my life. I've also have had my share of bad doctors but have good ones now. But I have to travel from Hawaii to California.
Do you have someone in your life who is older who can help you to develop a good strategy about where you are now and where you want to go next?
HMO plans have to allow you to be able to seek out a second opinion. But it is usually only one chance, so you want to pick carefully. What is it that you want figured out exactly? Hormone tests and and evaluation of this? A consult with a neurosurgeon?
Another option would be to switch your insurance to a PPO? Are you under your parent's plan or your own? If under your parents plan you might be able to ask them to switch it for a year, when their open enrollment comes up. If on your own plan is there another choice?
With a PPO you have to pay a percentage of the bill (I pay 20%). BUT I can pretty much pick any doctor in the country that I want to see unless they only accept cash.
I took last year off too. I needed to have time without doctors to just live my life. I've also have had my share of bad doctors but have good ones now. But I have to travel from Hawaii to California.
Do you have someone in your life who is older who can help you to develop a good strategy about where you are now and where you want to go next?
HMO plans have to allow you to be able to seek out a second opinion. But it is usually only one chance, so you want to pick carefully. What is it that you want figured out exactly? Hormone tests and and evaluation of this? A consult with a neurosurgeon?
Another option would be to switch your insurance to a PPO? Are you under your parent's plan or your own? If under your parents plan you might be able to ask them to switch it for a year, when their open enrollment comes up. If on your own plan is there another choice?
With a PPO you have to pay a percentage of the bill (I pay 20%). BUT I can pretty much pick any doctor in the country that I want to see unless they only accept cash.
Well, with my last MRI, it looked like my tumor barely was showing up & the radiologist thought it might have shrunk. It was approximately 6 mm when it was originally found and it took me a long time to come to the conclusion that I actually did have something there because of a couple of factors. But I finally accepted there was one there and last year, I actually had a neuroendocrinologist point it out to me. The last MRI showed about a 5 mm tumor & the radiologist couldn't even get another dimension on it. So perhaps mine really is shrinking. God can do that if He chooses. I figure I'm going to wait about two years for my next MRI unless my field of vision comes back abnormal or things happen where I want to ask for it sooner.
I don't know that I could do anything about the tumor as far as surgery, as I don't do well with cortisone shots. Plus, if you just read what Rumpled says about what happened to her or other people who've had surgery, it looks like something to be avoided if possible. So I wait. I think if you have the Lord, it really helps to rest in Him about it. Anxiety wears a person down and leads to depression.
My tests for the most part have been in normal range. I have plenty of symptoms but then, I have plenty of other things going on in my body that might explain things. The neuroendocrionolgist doesn't seem to think I need to be concerned along as mine isn't affecting my vision. I don't think she believes it is a functional tumor. I'm thinking if it was, maybe it's not functioning anymore. The next scan I hope will be read properly- I am concerned about that. And if it's bigger, then I'd want to step up when I got the next scan and maybe have them re-test some endocrine hormones.
I don't know that I could do anything about the tumor as far as surgery, as I don't do well with cortisone shots. Plus, if you just read what Rumpled says about what happened to her or other people who've had surgery, it looks like something to be avoided if possible. So I wait. I think if you have the Lord, it really helps to rest in Him about it. Anxiety wears a person down and leads to depression.
My tests for the most part have been in normal range. I have plenty of symptoms but then, I have plenty of other things going on in my body that might explain things. The neuroendocrionolgist doesn't seem to think I need to be concerned along as mine isn't affecting my vision. I don't think she believes it is a functional tumor. I'm thinking if it was, maybe it's not functioning anymore. The next scan I hope will be read properly- I am concerned about that. And if it's bigger, then I'd want to step up when I got the next scan and maybe have them re-test some endocrine hormones.
Have an Answer?
You are reading content posted in the Brain/Pituitary Tumors Community
Here are 15 ways to help prevent lung cancer.
New cervical cancer screening guidelines change when and how women should be tested for the disease.
They got it all wrong: Why the PSA test is imperative for saving lives from prostate cancer
Everything you wanted to know about colonoscopy but were afraid to ask
A quick primer on the different ways breast cancer can be treated.
Get the facts about this disease that affects more than 240,000 men each year.
