I stopped searching for new information on my illness (a rare form of familial amyloidosis) a while ago because there's never anything new. Because it's so rare, the literature only identifies patients anyway - there's no hope for treatment or cure. They just talk about us like dogs (we look like bloodhounds), then report what they see after they cut us up into tiny pieces after we die. It's just entertainment for the scientists to talk about over coffee - "Hey Joe, we found another one in Japan!" or "Yo, Sam, we opened her up after she died and you win the bet. She was filled with the stuff - there was gold (amyloid) in every nook and cranny."

It's so strange to see experts talk about your "family" like a piece of meat, especially when they have NO CLUE on what this disease does to a person. They keep saying the peripheral neuropathy is "mild." They have got to be kidding! That, or I'm a freak of nature. The "tingling" they refer to feels more like I'm being stabbed with ice picks or firecrackers exploding in my arms/legs and sometimes head. Mom must have been a freak too - her pain was so bad she often attempted suicide.

I'm thinking maybe these other patients are like me. I don't like to complain about pain, and I don't want to take narcotic painkillers. When my doc asked me recently about my pain levels, I told him they were manageable because there was nothing he could do anyway.

When I was first diagnosed, I was told I should feel lucky because it does not effect life span - only my quality of life will be reduced to zero. However, some in my family line died early from complications.

My son was my biggest concern back then. I wanted to stay alive long enough to see him grow into a man. After that, I was hoping I'd fall into the category of those few family members who went early. It scares the heck out of me to think I could live as long as my grandmother and mother, who both died at the age of 70. I don't remember my grandmother, but my mother's last 10 years were HORRIBLE. My son's memory of my mom is vague - I'd rather he not see me suffer as she suffered.

I just read about a patient who made it to the age of 79!! As it is now, I spend most of my time in bed in a dark room where my father died. The rest of the time I spend at the computer in another dark room where my grandmother died.

The thought of doing this for another 29 YEARS overwhelms me. What would you do? How would you find your will to live?

(((((((((Kathy)))))))))

how I wish there was a way to help you feel better and how I long for more research and cures to materialize

I dont have answers but I do have gentle caring ((((hugs)))) and sincere prayers for you.

praying especially that God will encourage you today

Hi.

I was trying to find some words to comfort you. To make you feel better. To ease what you are going through.

Of course, there are no words. How can there be words for what you wrote about?

The only thing we can hope for is RESEARCH and STEM CELL THERAPY, and whatever it takes to rid the world of these awful diseases. But that's in the future, isn't it.

But you did say you can live another 20 years right??

So all may not be lost. Technology invents technology. Research leads to discoveries.

SOME DAY, maybe not tomorrow!!, but SOMEDAY, someone may just find a cure for what you have.

I am the kind of person who looks at the glass as half full. I've never looked at the glass half empty.

Even in the darkest hour, it's not over TILL IT'S OVER!!!

You're not done yet.

So do keep doing your research and going on the net. That's how we find the latest stuff on diseases and research that is being done on it.

But until that happens, you take whatever they want to give you for your bad pain days. If you need it, you take it.

I just looked up treatments and what stood out for me was the nutrition part of it. The Omega 3 and the other supplements. Lots of supplements.

I gather you've been down this road?.

Well, I can only hope you continue travelling.

Don't know when you'll get there. But, hey, miracles DO happen!!!

I'm praying, believe me, I'm praying.

You are in my thoughts today, please believe that.

Melody

Kathy,

I am not familiar with your affliction so I looked it up. I only briefly read this one article but it states that it is able to be cured with a liver transplant. Now, I know you might not want to or be able to consider something so invasive but I thought you might be interested just the same.

Maybe they have something that can help you that would be the step "right before" the transplant?

I understand your concern about living another 29 years. Honestly, I do. I think the same thing. It is not something I want to do. If I were to list all of my afflications, MS would be the one that would catch everyones' attention. But, MS is NOT my biggest problem. If MS was all that I had to worry about healthwise, I would consider myself lucky. So, I can emphasize with how you feel.

I shall keep you in my prayers.





http://www.medicinenet.com/amyloidosis/page2.htm

Since there is nothing good for the actual disease then the question is a matter of quality of life, right?

I say take a second look at narcotics to take the edge off the pain. Narcotics do not necessarily make you the village idiot (pardon my lack of tact!). Chemically, your brain and body react to the drug differently than someone just using it to get high.

Plus, no narcotic is going to make you an addict immediately. If you do not like the reaction, you can go back to nothing at all.

Think about it.

Aarcyn:

You made a very good point.

Melody

Carolina

Thank you, but I have a different strain. The type you refer to the amyloid is produced in the liver. That is why a liver transplant is recommended.

My type is systemic and produced in the bone marrow and infiltrates everything, roots and all, down to the cellular level. It's similar to the primary type of amyloidosis, only at a slower rate. I don't qualify for stem cell rescue because my type is genetic - the gene will continue to instruct my body to overproduce amyloid.

Whatever I've lost at this point, I'll never get back. The amyloid acts like cancer, but it's a "natural" substance - the body doesn't know to defend itself. The amyloid infiltrates, then slowly replaces itself with whatever it finds. That's why docs never saw anything on x-rays or blood tests and could not explain why my mother was falling apart. For years, her official diagnosis was "hypochondria"

I appreciate your concern.

Thanks Cindy, but I'm already the village idiot. The amyloid also attacks my brain, and it will only get worse. My mother was child-like.

I also hold a lot of resentment against narcotic drugs regardless of what the law says - legal or not, it's an escape from reality. I don't want to hide - I want to live while I'm still here. Besides, I don't tolerate alcohol or medication very well - no real benefit, only bad side effects.

My mother became an alcoholic and addicted to sleeping pills. She became mean, unpredictable, and made a complete fool of herself in public. It caused her to become explosive. At one point, they locked her up in a closed psychiatric ward for a few months and pumped her up with more drugs to make her "behave." It didn't work. Eventually, everyone turned their back on her. You know the deal with so-called "addicts" - can't do anything with them if they don't want to help themselves.

If I become homeless, I stand a much better chance on the street if I remain sober. If I become addicted to alcohol or morphine, I won't stand a chance in finding a compassionate heart to keep me company.

Kathy, we have to find you a way to have an improved quality of life!

I feel very similarly to you, however my symptoms and condition are not nearly as severe as yours sound. I do not look forward to losing the ability to manage my Crohn's and possibly a return, some day, to an ostomy, with hands that can't feel and feet that can't get me to the restroom quick enough!I have days that I wish I could still go climbing, because then i would be getting some enjoyment and benefit from the risk of dying. The thought of "feeling" my feeling leaving my body is not making me happy or hopeful for the future.

Because of all my surgeries and the not-so-stellar outcome, my colorectal surgeon says my options (the ones others rush in to tell me about with big happy smiles on their faces) are very limited, because the "cures" for some of my issues brings even worse side effects. It is a round-robin with me too. . . .

But my gastro was kind and open-minded enough to document that I could get some benefit from medical marijuana. Neurontin caused me my most dreaded side-effect, fecal incontinence, which is pretty miserable without a colon or rectum, and when you have **** fissures -- it is like lemon juice in a paper cut! And the pain can go on for hours. Then add to that a bad day with the neuropathy in my feet . . . and well, it becomes unmanageable really fast. It would require huge amounts of narcotics to help me deal with the pain, but a half a vicodin and a few puffs of mmj and I can usually get about 4-6 hours of relative comfort. I have no idea where you live or if this would be available to you, or even appeal to you, but intractable pain is almost always one of the conditions that will qualify you for its use medically. And don't worry, you won't be seeking other drugs just because you use it. Used as medicine it becomes a completely different kind of friend.

I just wanted to share this with you in case you have not considered it. Feel free to contact me if you have any questions.

Thank you Lefthanded. My docs have recommended it also, unofficially and only because they too became frustrated with trying to figure out how to fix me. It would also help with my absent appetite and maybe even ward off the impending glaucoma.

It's the only drug I would consider. I've known "stoners" all my life. While it's true some when on to "bigger and better" things, most didn't. They also didn't follow the same path as other "addicts." It didn't turn their brains to mush.

Unfortunately, it's illegal in my state. My docs would lose their license if they gave me marijuana. I like them too much to do that to them - not that they offered.

I don't want to look for it out on the streets because I've never been able to get away with doing something "wrong" for very long. Besides, with my scatterbrain, I'd probably light up a joint and decide to take a walk out into the sunshine to enjoy the fresh air. With my luck, I'd exhale a huge cloud of smoke right into the faces of five or six policemen out on patrol to make sure people are wearing their seat belts.

I may look bad in "hippy chick" dresses, but I would look even worse in prison stripes!