Kathy --

Good point.

Keeping notes helps. At least it helped me. I couldn't remember very well, so without the notes I wouldn't have had a very clear view.


I'm unclear whether you think your fainting is related to having familial amyloidosis. I know nothing at all about that.

I used to almost faint a lot.

(I need a little smilie of someone rolling out red carpet... or playing a drum roll, so that I can use it before I talk about B12.)

If you have low B12... that might contribute to feeling faint... do you have ridges on your fingernails at all? that can be a sign of low B12, along with losing the moons on your fingernails...

Since I had B12 replacement I don't feel faint the way I used to... but it took so long for me to get the replacement therapy that I have some permanent nerve damage...

I have a page where I show how B12 causes us to have less than enough oxygen in our blood...

http://www.health-boundaries-bite.co...n-Illness.html

.

Thanks ConsiderThis

It's strange how often docs overlook vitamin/mineral deficiencies as the cause of illness. I'm glad you were able to find relief from your symptoms with B12 replacement therapy - sucks you have permanent nerve damage though.

My fainting spells are caused by orthostatic hypotension. My blood pressure is normal, even sometimes high when lying down, but it drops very low when I stand up. Even if I go to gradual standing, it tends to drop within a few minutes of standing. It doesn't happen all the time. Sometimes I'm fine, sometimes I'm able to recover without anyone noticing, and other times I drop like a ton of bricks.

The orthostatic hypotension and GI problems are caused by autonomic neuropathy. In my case, the autonomic neuropathy is due to infiltration of amyloid (a destructive protein) on the autonomic nervous system.

I banged on a lot of doors for quite a few years before I finally accepted the fact that I'm totally screwed

Hi Kathy,

Well you certainly have a cute approach to dealing with it, emotionally I mean.

"totally screwed"

Laughing is sometimes the ONLY medicine... and amazingly it works. If I could laugh more, I bet the stress of the legal stuff wouldn't affect me so much.

Did you always have familial amyloidosis? or did anorexia set it off in some way?

the "autonomic" things you write interest me. That's like the nerves/muscles in our stomachs???

When I had tetanus, a lot of the discomfort was in my stomach... it would feel as if it were turning to cement... and then at other times it would feel as if it were a ball of worms.

Now when my stomach growls I don't feel anything, so it always seems to me as if the noise must be coming from outside.

I do think, that for me, if I could just escape some of this stress, that the B12 would continue to heal my nerves...

Oh darn, I've not been careful how I wrote this... the form of B12 that has the ability to regrow nerves is Methylcobalamin.

I have shots because they are SOOOO cheap. Shots are cyanocobalamin. So when I have a shot my body converts that into Methylcobalamin. (there's always a loss in the conversion)

And after a lot of shots I can still, even at this late date, feel improvement.

But the dang stress wipes it out.

So, I wonder if after a time and enough B12 if you could feel improvement...?

Or, did I totally misunderstand the autonomic thing?????
.

ConsiderThis

I'm not sure if it's possible to deal with legal matters and not be stressed out as a result. I hope you'll be able to resolve those issues.

Nope - you didn't misunderstand. I'm leery of taking anything that targets nerve growth because of the amyloid. Most likely, it would have an opposite effect and cause further amyloid production on my nervous system and/or vital organs.

I didn't know anything about the disease until I was diagnosed in 1996 at the age of 38, five years after my mother died from the illness. I had no idea I was sick until I went to an optometrist for new glasses. He freaked out when he looked into my eyes and told me to see a corneal specialist right away. I'd been experiencing some occasional blurriness, but figured it was just makeup in my eyes.

Mom had been really sick for as long as I could remember, but back then docs didn't know about this type of amyloidosis so they told us she was a hypochondriac. Docs had no idea what it was until 1990. Mom died in 1991, and at the time she was the only known case in the United States - the rest were in Finland.

By the time she was diagnosed, I didn't believe her. I figured her doc was patronizing her with a fancy name. Back then, medical literature on amyloidosis stated it was an end stage illness and quickly fatal.

I have the inherited form of amyloidosis. I was born with the mutated gene, but symptoms don't begin to show until the third decade of life. My son has a 50/50 chance of inheriting this, but he doesn't want to have any genetic testing done until he decides to have children of his own. I don't blame him.

Gosh, that's really a lot to deal with.

Boy, you have to have a really good mental outlook.

I feel so sorry for you and your mom. That must have been traumatic for you.

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

Can you tell me again how what you have works???

why is it that more nerve growth would be a bad thing???

You know, it's interesting though, about Finland.

People who have pernicious anemia tended to be more from that part of Europe. (now low B12 results from many different things besides an hereditary predisposition.)

The reason I say it's interesting, is that several years ago a woman visited my site and had great results when she increased the amount of B12 she was taking.

If I remember correctly she was a ... darn it, I do not remember very well, but something to do with chemistry.

She told me to look into a site called Eat Right for Your Blood Type. I did, and it made just the most huge amount of difference to my health.

At first I was major skeptical. But when I read a bit of research excerpt on the site about pernicious anemia tending to be associated with one blood type more than others... I was more receptive to the ideas, because I know that my mother had pernicious anemia, and now I have all these problems with B12 deficiency. (I usually say "low B12" because according to B12 tests I'm not deficient. I, however, distrust the tests.)

http://www.dadamo.com/

Look at the Typebase4 Food Values thing... it's over on the left hand side...

When I looked at it all those years ago, I realized that the things that made me feel really good when I ate them were "beneficial" for my blood type...

That blew me away.

It now reminds me of how you say you like and need to listen to your body.

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

I've been thinking about what you wrote, and now that I've read it several times, it makes more sense to me.

I don't want to burden you with writing more about it.

*

I was thinking about a foreign film I saw with Netflix a few weeks ago. It was called Dear Diary, but in French, maybe.

The beginning was a little slow...

But then the last bit is about how his feet itch and it's driving him crazy and he can't sleep and he begins to lose weight.

He goes to all different skin doctors. The very best ones.

He says that this is all true, because it's from his diary the way that he wrote it at the time.

And each specialist skin doctor prescribes something else, and he buys all this stuff. There's a shot of him with a vast array of things.

And then he calls his friend who says that one of the things could be dangerous and cause anaphalactic shock... so he doesn't use that one.

Then he has to have an MRI or something... I forget how that's related to his skin... and while he's having it or later, again, I forget, they notice this black spot on his lungs... and it turns out he has cancer and that itching feet is a symptom of the particular kind he has....



So then he has chemo and apparently he gets well.

have a nice day

dont know if i have time to type much now

I've seen so many horror stories on amyloidosis patients where standard treatment has had disastrous effects. A famous person who comes to mind is Ariel Sharon in Israel. He received the appropriate treatment for his initial stroke, but it wasn't an ordinary stroke. It was cerebral amyloidosis that caused the initial stroke, and the treatment caused him to have an even greater stroke - poor guy is still in a coma.

When I first noticed signs of peripheral neuropathy in my arms/legs, I saw a specialist in wholistic medicine. He placed me on a lot of herbal supplements, and it really seemed to help. However, protein levels on my kidney tests skyrocketed and I didn't think it was worth it to trade kidney function for pain relief. I've been gun shy ever since.

What works for me is knowing my ancestors endured this as well for centuries, and they had it a LOT harder than me. If they could do it, so can I.

What also works for me is my faith in God (though I'm not a Christian). In looking back, God has always seen me through hard times - eventually, lol. I have no reason to doubt He's still there. But this time I won't get out of this alive - none of us do in the end. I have no choice but to sit back and enjoy the ride with as much grace and dignity as possible. Hopefully, when my time comes, God will say to me with a nod "That'll do, pig."

It has opened me up to appreciate what I have left instead of focusing on what I've lost. It has taken my focus away from my own needs, and given me time to focus on the needs of others. It has caused me to cherish life - in whatever form - even when it sucks.

Wow, very moving.

Good for you.

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

I didn't know that about Sharon... was he in pain a lot, then?

Yes, I've got to get out of this blue funk I'm in.

I think I'll try to get a credit card tomorrow. If I can make it to January... then I think I can refinance.

I don't want to have to sell my home.

I love my garden.

I wonder if being afraid I might have to sell my home is keeping me from going outside as much...

It makes me laugh at how I scrimped and saved to pay down the mortgage on my condo... and then the Sotheby's realtor got all my effort.

I guess there's no substitute for enjoying our lives.