In the dark

Hello out there I have never been one to ask for help, in fact I feel much more comfortable giving aid as apposed to taking it. I am 33 years old a father of three of the best children in the world and married to a woman who even after 11 years of marriage takes my breath away. It is not work, love, or family that is defeating me. Through a long series of missed diagnosis and outright malpractice my body is failing me. Three years ago I was in great health gainfully employed and living "The Good" life. It was April 1st 2008, yes april fools day, that I suffered a stroke and was left paralyzed on my entire left side. CT and MRI scans found no evidance other than several small dark spots that were explained away as being a result of many years of chronic migrain headaches, and advised me that my parylasis was psycalogical. After 9 months in a wheelchair and intensive physical theropy I re-learned to walk with the assistance of a leg brace and crutch, after being told it was all in my head. It was about 6 weeks after my stroke that I suffered my first siezure, scaring my wife and small children to death. My neurologist advised me that the siezure was also psycalogical as during the EEG their was only a small slowing in brain activity. So I started seeing psyciatrists, councelers, and even stayed in a mental health facility for 3 weeks, all the time the seizures were becoming more prominant and on several occasions causing concusions and resperatory arrest, again my neurologist adamently denying any neurological evidance, try holding your breath for 8 minutes. This continued up until late 2009 when my psyciatrist advised my my problem was not psycalogical. Thus armed I returned to my neurologist (the only one who would accept my insurance for 200 miles) and begged for some help. He gave me several prescriptions some anti depressants some anxeity meds and a seizure med called ?dilantin? after 5 weeks I was in the hospital suffering from renal failure as a result of drug toxicity becouse my doctor had repetedly assured that the "side effects" were normal. Last trip to that "doctor".
After several months the drugs had finally cleared my system I found a new neurologist who came to a pain clinic neer my home every 6 to 8 weeks and I was put on Keppra a good drug in most cases, however it prooved to not be theraputic in my case. In the interveening months a nother Neurologist had opened a practice in my home town and because of the inconveniance of waiting 2 months to even talk to my current physician herecomended we try the new local doc. At my first appointment he placed me on Depakote which appeared to be my "magic Bullet" after less than a month I was siezure free and now having complete ftust in this new doctor after so many had failed me I had no problem when he said I need not come back for a year unless I had a problem. Nine months later I became deathly ill and was rushd to the hospital where they checked my liver enzymes, kidney function, and med levels, all toxic. Over the last 6 months or so I have regained some use in my liver and one of my kidneys, but toxins are building up faster than dialysis can remove them and I am not eligable for organ transplant. How does one explain this to a small child? How do you tell them you will miss their next birthday, their graduation, their wedding? I know what is happening to me and where this road will end, but my little girl, how do you tell a nine year old you are dying? and my boys are too young to even remember me. It was my own nieve trust in doctors that led me here and it is the low standard of medical care in my state that leaves no legal recourse. So here I sit Screeming into the dark asking the the oldest and most childish question on earth "Why"

My heart goes out to you friend. Our stories of suffering can sometimes be very painful and the why question is one that may never be answered this side of heaven. I have Epilepsy and am on Dilatin and have been for 31 yrs. I know that the long term side effects of this med cause liver damage and osteoporosis. I can feel my bones and my body becoming more and more less flexible. My wife cried last night because she is scared that she will not have me much longer. This was after a seizure. I have dealt with the trials and testing that a failing body has for many years. To be honest the only thing that keeps going is my faith that heaven is a place where no suffering will be allowed. As for now, I suffer from major depression and psychotic episodes where I hear voices and just when I think the suffering will stop it reinvents itself. One more thing, if you don't have a friend in your life that you can talk to, I mean really talk to, cry with and will allow you to be held up when you cannot keep yourself going. I will pray for that person to come along side you and support you because suffering is worse when we are alone. Also, Jesus sticks closer than a brother and has suffered so much that he can relate.....Akita

Hi Ben,
I'm so sorry to hear about your struggle and frustrations with doctors. Unfortunately, it is very common when you have seizures. I am producing a movie about epilepsy, because I have seizures also - and we are connecting with many doctors and others that may be able to offer advice to you. I'm not sure if you have tried any alternative therapies, but diet can greatly reduce seizures with no side effects. I'd be happy to share what I know, and connect you with others that may also be able to help you out. Please email me so we can talk. My email address is [email protected]. May I also ask where you are located? Wishing the best for you and your family.

Sincerely,
Tiffany Webb
www.sacreddisease.com

I can certainly identify with these stories, not myself, but with my partner. Even in Canada - where our medical system is supposed to be wide open to everyone, we haven't been able to get the help we needed, and my partner has a 30 yr history of seizures, absenses, neutral EEG, prescriptions, mis-diagnosis etc. Now we have a dilemma probably caused by the medical issues, that goes way beyond where we thought we'd ever end up, and he may be hospitalized, or jailed - there's no middle ground. We don't have our own kids, so i'm not sure i'm qualified, but if they're young enough, maybe they don't need to know how much your suffering, and as they get old enough to deal with it, enough details can be added, as they ask questions. Coming from the wife's perspective - i'd be willing to bet your partner needs your strength, and your love, and your compassion, and in turn she'll take care of your kids for you.