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Female | 40

What Could Be Causing My Persistent Health Issues?

I FEAR DOCTORS!!! I was put in a coma in 2016 & was near death the 3rd day. I didn't come out of the coma till the 7th day. I found out last year, that my diagnoses was kept from me. I was told in 2016, it was only bc of trigeminal neuralgia, septic shock and ARDS. HOWEVER, I learned last year that I was also diagnosed with pulmonary edema, emphysema, a mild heart attack, a cyst on my right kidney, a damaged liver, they removed my gallbladder .... along with the Septic Shock, trigeminal neuralgia and ARDS!! I also saw that I was overdosed on the 3rd day in the coma on 1 of my epilepsy meds. I've been an epileptic since about a year old from a spider bite. So, throughout my life I've taken multiple meds. In 2016, I was taking 400mg of Lamictal, 300 mg of tegretol (which i was overdosed on in the coma) & I was also on 500mg of Dilantin then. I went to the hospital for weeks bc, my chest had been killing me, I had trouble breathing bc it hurt to take a breath, I got wicked headaches often, dizzy spells & body weakness. I was put in the coma the next day. Again I was only told about the Septic Shock, trigeminal neuralgia and ARDS. Shortly after the coma, my neurologist put me on 600 mg of Lamictal, 400mg of toprimate, 2000mg of levetiracetam & 1800 mg of felbamate. In 2019, my old neuro told me i had "mental issues". Throughout the years since, I've had sepsis 1 time & Septic shock twice. After I moved & found a new neurologist I learned that toprimate & Lamictal weren't for my type of epilepsy. Although i have seizures often, they were not helping my epilepsy or any of my health. I saw a neuro physiologist after my VNS battery was changed & he diagnosed me w late stage 1 alziemers due to the seizures, meds & 2 brain surgeries on my temperol lobe and agreed that Lamictal & toprimate weren't helping. My neurologist took me off toprimate but wanted to have my kidneys, liver & heart checked before he took me off Lamictal bc both levetiracetam and Felbamate can mess w those & taking me off Lamictal he plans on upping one of those. So he put me on Lamictal xr to help stop my dizzy spells & had me see a cardio, a pulmonary, a liver doc and a kidney doc. They saw the scaring on my heart & an irregular heart beat, the cyst on my right kidney, emphysema & my liver scared, w fatty tissue and enlarged to 21cm. When they asked me about pains and or unusual issues i had, I only told my neuro physiologist first, bc I remembered what my old docs put me through. Ive not been completely diagnosed bc my liver will swell up for weeks (& I know when it does bc pains r indescribable), but then the swelling will go down. I've chest pains when my liver swells, I also have periods when it hurts all around my stomach & back to stand up straight or sit straight up. My periods been irregular for years. I'll be incapable of eating sometimes bc of pain all around my stomach. The right side of my back is excruciating sometimes. I'm incapable of holding urine & sometimes I don't feel I have to go or realize I'm going. My urine is red every few weeks but will go back to almost orange or sometimes ... it'll look like water. My new doctors have seen it all in urine tests. My feet swell up sometimes to where my legs will hurt when I where socks bc theyre too tight. I don't get headaches as often now, but when I get them, the pain can't be explained. I've diarrhea constantly & I have for years. My shoulders were in unreal pain this past year a few times, for a few days. I'm not asking for a recommendation bc again, I fear doctors due to them overdosing me in a coma & keeping medical info & records from me. I just want an idea of what this is!! Yes I smoke. I have since I was 14 (26years). No I DO NOT AND WILL NOT DO DRUGS!!! Biggest reason being my epilepsy, but I've also lost a friend who gave his life to drugs when he got out of the military. I do smoke pot right before bed (I do it to put me in another world to help me sleep bc I have flashbacks of abuse from my x and honestly, i will say that sometimes it'll help the pain im in). I HAVEN'T TOUCHED ALCOHOL IN 3 YEARS! From the end of 2018 to 2020, I was an alcoholic due to doctors refusing to help me, abuse from my x and the pains I was experiencing. However, when I left my x, I stayed w christian friends & w/in 1 month, I gave my life to Christ ???? When pains act up or symptoms, I simply pray ?. BC God IS ? Im living proof to that!! He's the only reason I made it out of my coma. It's on the records that, they didn't comprehend my coming too. However, it's also on the records of an eeg when I was in it that I was having a dream while in the coma. (& Its A dream that I will never forget!!?) There's times when I'm indescribably nautious! The pains and issues I've explained come and go non stop. What is this and why is it ignored by my new docs who tested everything and diagnosed what was found?

Dr. Samrat Jankar

Surgical Gastroenterologist

Answered on 16th Jan '24

According to your symptoms, it is critical for you to see gastroenterologist in order that the doctor will make proper evaluation and diagnosis. The symptoms show that you may be suffering from gastrointestinal concerns like liver disease and kidney complications. Prompt addressing these issues will prevent further complexities. We suggest to visit a specialist who will give you the necessary treatment and care.

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