k2626
06-12-12, 03:26
I know I have HA, and I think I have an extreme case of it-it has taken over my life. However, my current situation which I will post below is TOO close to home and I'm terrified. Im writing this for advise, and to get it down on "paper"
I lost my mom at 9-she was an alcoholic and clinically depressed-she essentially drank herself to death. Though I had an amazing life on the "outside"-I had a terrible childhood. My father was always traveling for work while my mom was locked in her room drinking and wasting away. I assume this as well as genetics has something to do with my HA-my sister has anxiety and brother is clinically depressed as well.
Here my history
I am 37 now, and my HA started when I was about 23.
AIDS-My best friend called me from college to tell me he found out he had late stage AIDS. I soon after started to feel a bit spaced out and was CONVINCED I had AIDS. I was crying daily, and thought for sure I had it though I had no reason to suspect it. I took a test I was fine.
BRAIN TUMOR- I still felt out of it and started noticing little squiggly light blue dots when I looked at the sky or a light surface (known as visual snow), and I started to get electric short stabbing head pains (known as ice pick headaches). At that point I thought for sure I had a brain tumor. I went to the walk in dr every single wkend about this visual snow and had a CT scan-it was fine. Some time later I started to get occular migraines. You get tunnel vision with your site (you literally cannot see)- for about 10 min, then the headache onsets. Oddly, I didnt get too scared about this. I still have these.
I learned to ignore the visual snow etc--I went at least 8 yrs not worrying about my health at all.
ANERYSEUM- My boss's sister had one, that night she died I started getting my ice pick headaches- I was convinced I had one. Had MRI-I was fine. They are a form of migraines and can last a long time. They are so scary-literally bring you to your knees when they hit.
MY DAD- 4 yrs ago I lost my dad to pancreatic cancer, he had been misdiagnosed for at least a yr. He died 2.5 months after dx. I flew to see him every week and helped him die. It was an awful death, he literally was screaming with his eyes half glazed open what sounded like "nooo" just hours before his death. I found out this is common. Regardless, it is indescribable to watch someone you love die a horrific death.
WHEN I FOUND OUT- he had PC, I started to get a lower stomach cramp non stop. I was convinced I had PC. I wouldnt even listen to my brother read the symptoms and causes as I knew my HA would kick in. Its funny because now I know the place where I had pain is not where the panc is.
MS- a wk after my dads dx, I started to get hundreds of muscle twitches all over my body, hundreds of cracking joints (literally I could not move with clicking), and extreme stabbing electric pains that felt like bee stings which would hop around-mainly my fingers and toes. I developed lines of blood under my finger nails and beaus lines too. I did not have MS
ALS- so the muscle twitching made me think it had to be ALS. Had tests, not ALS.
I spent most of my time with my dad in his final months researching what it could be, and getting tests in Arizona (bone scans, heart, etc).
About 6 months after he passed away all the symptoms got much better. I still get the twitching but maybe a few times a day vs hundreds. I still get the bee stings but its only every few months. I still get rashes and blood under my nails etc once in awhile. Drs have run SO many labs. Once dx me with possible CREST which is an AI disease though I never had labs confirm.
MY DAUGHTER a few days after she was born I could not move my neck without crying, it was such bad pain. My hub had pulled on my neck 3 hrs during labor. It was a pulled muscle but I was convinced it was a blood clot, I figured no way can that pain be muscular-I couldnt move! I then started having daily occular migraines. So off for an MRI- I was fine.
TODAY 6 months after my dad passed I was dx with chronic pancreatitis. I was getting epigastric pains and this time I KNEW it was my panc. Since then, I get an EUS annually (the golden standard for seeing lesions) and have had two MRCP and CT. I have been in a longer flare than usual and have had bowels issues and am SO concerned I have Pan Cancer.
WHY DO I HAVE TO HAVE A DISEASE WITH AN ORGAN MY DAD DIED OF!!!! OF ALL THINGS WHY THIS.
It consumes my mind. I think about in NONSTOP. Again, I admit I have HA. I actually cannot believe I spent so much time worrying about my health when I should of had more conversations with my dad, instead I would be on my iphone researching what could be wrong with me. Though he was out of it a lot-I still totally focused on me.
This time its just different, its the same organ. I know PC is hereditary. I try to reason that if I had PC I would KNOW by now (6 yrs of symptoms-gerd, 3 of obvious pancreatitis), I would be very very very sick or it would of shown on one of my scans by now. But I also know it can be missed.
Not sure what I am looking for by this post, just needed to let this out. Im terrified and miserable.
I lost my mom at 9-she was an alcoholic and clinically depressed-she essentially drank herself to death. Though I had an amazing life on the "outside"-I had a terrible childhood. My father was always traveling for work while my mom was locked in her room drinking and wasting away. I assume this as well as genetics has something to do with my HA-my sister has anxiety and brother is clinically depressed as well.
Here my history
I am 37 now, and my HA started when I was about 23.
AIDS-My best friend called me from college to tell me he found out he had late stage AIDS. I soon after started to feel a bit spaced out and was CONVINCED I had AIDS. I was crying daily, and thought for sure I had it though I had no reason to suspect it. I took a test I was fine.
BRAIN TUMOR- I still felt out of it and started noticing little squiggly light blue dots when I looked at the sky or a light surface (known as visual snow), and I started to get electric short stabbing head pains (known as ice pick headaches). At that point I thought for sure I had a brain tumor. I went to the walk in dr every single wkend about this visual snow and had a CT scan-it was fine. Some time later I started to get occular migraines. You get tunnel vision with your site (you literally cannot see)- for about 10 min, then the headache onsets. Oddly, I didnt get too scared about this. I still have these.
I learned to ignore the visual snow etc--I went at least 8 yrs not worrying about my health at all.
ANERYSEUM- My boss's sister had one, that night she died I started getting my ice pick headaches- I was convinced I had one. Had MRI-I was fine. They are a form of migraines and can last a long time. They are so scary-literally bring you to your knees when they hit.
MY DAD- 4 yrs ago I lost my dad to pancreatic cancer, he had been misdiagnosed for at least a yr. He died 2.5 months after dx. I flew to see him every week and helped him die. It was an awful death, he literally was screaming with his eyes half glazed open what sounded like "nooo" just hours before his death. I found out this is common. Regardless, it is indescribable to watch someone you love die a horrific death.
WHEN I FOUND OUT- he had PC, I started to get a lower stomach cramp non stop. I was convinced I had PC. I wouldnt even listen to my brother read the symptoms and causes as I knew my HA would kick in. Its funny because now I know the place where I had pain is not where the panc is.
MS- a wk after my dads dx, I started to get hundreds of muscle twitches all over my body, hundreds of cracking joints (literally I could not move with clicking), and extreme stabbing electric pains that felt like bee stings which would hop around-mainly my fingers and toes. I developed lines of blood under my finger nails and beaus lines too. I did not have MS
ALS- so the muscle twitching made me think it had to be ALS. Had tests, not ALS.
I spent most of my time with my dad in his final months researching what it could be, and getting tests in Arizona (bone scans, heart, etc).
About 6 months after he passed away all the symptoms got much better. I still get the twitching but maybe a few times a day vs hundreds. I still get the bee stings but its only every few months. I still get rashes and blood under my nails etc once in awhile. Drs have run SO many labs. Once dx me with possible CREST which is an AI disease though I never had labs confirm.
MY DAUGHTER a few days after she was born I could not move my neck without crying, it was such bad pain. My hub had pulled on my neck 3 hrs during labor. It was a pulled muscle but I was convinced it was a blood clot, I figured no way can that pain be muscular-I couldnt move! I then started having daily occular migraines. So off for an MRI- I was fine.
TODAY 6 months after my dad passed I was dx with chronic pancreatitis. I was getting epigastric pains and this time I KNEW it was my panc. Since then, I get an EUS annually (the golden standard for seeing lesions) and have had two MRCP and CT. I have been in a longer flare than usual and have had bowels issues and am SO concerned I have Pan Cancer.
WHY DO I HAVE TO HAVE A DISEASE WITH AN ORGAN MY DAD DIED OF!!!! OF ALL THINGS WHY THIS.
It consumes my mind. I think about in NONSTOP. Again, I admit I have HA. I actually cannot believe I spent so much time worrying about my health when I should of had more conversations with my dad, instead I would be on my iphone researching what could be wrong with me. Though he was out of it a lot-I still totally focused on me.
This time its just different, its the same organ. I know PC is hereditary. I try to reason that if I had PC I would KNOW by now (6 yrs of symptoms-gerd, 3 of obvious pancreatitis), I would be very very very sick or it would of shown on one of my scans by now. But I also know it can be missed.
Not sure what I am looking for by this post, just needed to let this out. Im terrified and miserable.