Chronic pain and upper abdomen? Please see added messages!!!

Posted by brad830 @brad830, Dec 19, 2023

I have had severe lower chest pain and high stomach pain with some nausea and vomiting for and entire year. Also severe indigestion that is treated daily with a prescription dose of Nexium and Famatodine twice a day. Since the age of 19 I have multiple medical issues. I am now 43 year old female.. I have Wolf Parkinson White syndrome with an ablated AV Node. Two pacemaker placements with one wire revision the last being in Aug 2023. In the past 20 years I have had a C-section, hysterectomy, gallbladder appendectomy, a open surgery to the right abdomen for a repair of my urethra due to over 100 are more kidney stones in 15 years. I have been experiencing symptoms of uncontrolled pain for a year now I have seen every specialist they can think of. I have had many test to include but not only a colonoscopy and an upper stomach scope. With no answers I am very fortunate to live in the town of Augusta Ga. With one of the states large Medical colleges and research hospitals! Unfortunately the Drs are now talking about UNC but I just don’t know what to do!

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pb50 | @pb50 | Dec 19, 2023

Wow. That makes me hurt to read it. As a GA native now living in NC,
I would have thought of Duke or UNC as great options. Both are stellar. But one may have a stronger focus where you need expertise - and I’d think your docs at MCG would have that informed perspective.
And if that doesn’t seem right, there is always the option to have your docs refer or self-refer to Mayo. The closest one to you is in Jacksonville FL.

brad830 | @brad830 | Dec 19, 2023

In reply to @pb50 "Wow. That makes me hurt to read it. As a GA native now living in NC,..." + (show)

Thank you I am looking into self referral at Mayo now!

jgroudan | @jgroudan | Dec 21, 2023

Have you researched Abdominal Cutaneous Nerve Entrapment. Google or youtube.

brad830 | @brad830 | Dec 21, 2023

In reply to @jgroudan "Have you researched Abdominal Cutaneous Nerve Entrapment. Google or youtube." + (show)

No but thanks I will.

jenatsky | @jenatsky | Dec 25, 2023

It’s unfortunate that the general public seeks medical answers from doctors and hospitals but cannot accept when they cannot provide you the answer you hope to receive. I’m a retired nurse and I’m on this site because of my chronic pain syndrome and severe spinal OA. I have learned to accept that medicine just may never know all that the human body has to offer. New discoveries are made everyday about how our bodies work. I am sorry you feel that medicine may be giving you a run around. At least it seems they believe you may receive better diagnostic services at another facility. They are simply referring you for further care which is a common practice across the country. Accept that they haven’t thrown up their arms to say they cannot help but do want you to get better.

brad830 | @brad830 | Dec 26, 2023

This is a little offensive! I promise you there is a lot I have to except because it just can’t be fixed. I wear a freakin pacemaker all from a man made issue. A Dr who thought he was God!!! The biggest reason I was reaching out is they thought I had an autoimmune disease.
Thanks for your overbearing attitude but I was diagnose finally on Friday. I have Amyloidosis which is a death sentence I am only 43 and my kid is 20 and I am being told 3 to 5 years at the longest. So the next time you want to get on your high horse remember there are some of us who will never see their 50th weeding anniversary, my 2 children walk across the college stage to become the great Drs I know they will be, never will I see them get married, never will I hold my grandchildren, and so on. You need to think before you speak because you never know what Hell some people are living through!!!

kenc | @kenc | Dec 26, 2023

I have had a coupole of MD's throw up their hands and tell me there is nothing more that I can do for you. OTH I have, through my own research, located a medical team that is trying to help me.

brad830 | @brad830 | Dec 26, 2023

EVERYONE AS OF FRIDAY AFTER MUCH BLOOD WORK I HAVE BEEN DIAGNOSED WITH A AUTOIMMUNE DISEASE CALLED AMYLOIDOSIS. THIS IS BASICALLY A DEATH SENTENCE! THEY ARE SAYING I HAVE AT THE MOST PROBABLY 5 YEARS. I WILL NEVER SEE MY 50TH BIRTHDAY.

robertreidrx | @robertreidrx | Dec 26, 2023

In reply to @brad830 "This is a little offensive! I promise you there is a lot I have to except..." + (show)

You are so right!!! I found out about a year ago that I have wild type ATTR ( Amyloidosis). It took 2 years for my many doctors to figure it out. It is one of the most under diagnosed disease there is !! The type I have is the rarest of them all, so I'm told. I , maybe have another 2 to 3 years to live if I'm lucky. I'm 67 years old which also makes it worse. I just found out that my 71 year old brother has ALS and he maybe has a couple of years to live. I will never have grandchildren either! Good luck and hang in there the best you can. Ignore people like her who has this high and mighty opinion about her medical colleagues . If they can't figure it out they act like we're making it up or we just have to live with it.

brad830 | @brad830 | Dec 26, 2023

In reply to @robertreidrx "You are so right!!! I found out about a year ago that I have wild type..." + (show)

Thank you for sharing your story with me! I really appreciate it. My goal now is to find others living with this disease to see how their bodies are reacting. The scariest part to me is that I already have one kidney. I was only born with one. I am terrified at this point. So thank you again very much.