Anyone ever hear of amyloidosis? I am having a bioposy to test for this...

[mngirl]

We have decided to wait on taking the autoimmune suppressant medication until we have tested for this. I have to say that I am a little scared of having this biopsy done. A needle in the stomach, they push in some fluid and pull it back out. Then they look for a certain protein.

My dr. had to find a pathologist who could do the test. He talked with one at the hospital and he said, "I only perform that on dead people! TAlk with this other doc." Can you believe that! So, he talked with the other doc who said that he can do it. So, this week when I go in for an infusion, they are going to have me see this pathologist for the test.

My dr was on call 2 weekends ago and was thinking of my case, so he spent it doing some research on what could be causing some of the problems I am having. He came across amyloidosis and talked with another doc about it. Many symptoms of this match exactly, as do many other diseases, but it is something we defintely need to cross off the list. Amyloidosis is something VERY BAD to have. The outlook is awful.

Cross your fingers that this test comes out negative.

2 weekends ago, I started to have some major chest pressure/pain. By that Sunday night I was about to head into the ER. I know that it is not a heart attack, but I couldn't breathe. I saw my doc on Monday afternoon and he ended up giving me a good shot of Toradol. This helped for the evening, and then on Tuesday it started back up again. I started to feel a little rumble in my chest, but I didn't have a fever or cough. I wasn't so bad in the morning, but as the day went on it got worse. By bedtime I could barely take in any air. On Thurs, I had another infusion. But the chest pain/pressure was still bad. My doc wasn't going to stop in that day until I started having problems during my infusion. As my treatment was going, my pulse-ox started to drop from 99 down to the low 80s. The nurses said that it was the machine....but I started to feel dizzy and it was getting harder to breathe. So, they told me to take some deep breaths and to cough. Sure enough, it started to go back up and the nurse said "It IS you!" Then they got REALLY concerned and called my doc to ask if they should put me on oxygen. My doc said that he would be right over (he was on hospital duty last week and not in the office." But he came to see me! My levels just kept dropping, so we had to turn down the rate of my treatment.

I told him that I was still having the chest issues and the new rumbles. I told him that there were at least 4 sick people at work and that I was afraid I was going to get something. He checked me out and said that I had a chest infection. But since I am on the Prednisone that I wouldn't ever present a fever and it also supresses the cough. He said that totally explains why the chest pain was so bad and how I was feeling each day. He said that we shouldn't mess around and he put me on antibiotics. He told me that if I got a fever at all this weekend, that I was REALLY BADLY sick and needed to get into Urgent Care or the hospital. So far so good with no fever. But yesterday morning I wasn't feeling too bad, so my family and I decided to talk a little walk on the snow paths through a local park. While I was out there, we went slow and I didn't feel too bad. And then we got in the van to go home, and it hit me HARD. I got SO DIZZY and the chest pain was unbearable. We got home and all I could do was go to bed. I couldn't breathe and once again thought I needed to head to the ER. Last night I actually even thought I WAS having a heart attack since I was getting shooting pains. Today the chest pressure is still there and comes and goes with AWFUL bouts.

I think that he is going to have to do some tests to make sure that there isn't something more going on. I just feel like my heart isn't working well. I had my heart checked out the week after getting out of the hospital when they diagnosed me with POTS...At that time my chest pain was awful too, but different from what I am feeling now. I think that pain was due to the MAJOR changes in my heartrate. The tests they did then came back fine. It has been about a year and I am thinking that they need to check again, especially with me feeling like this.

Anyway...I just wanted to know if anyone has heard of amyloidosis and if anyone is experiencing this MAJOR chest pain/pressure?

TIA.

Lisa

[lthomas521]

If you think you have amyoidosis, you really might want to think about going to Mayo Clinic. You are in Minnesota, aren't you?

[MightyMouse]

My maternal grandmother died from amyloid. We still don't know if it was primary or secondary--secondary is when the amyloid deposits are caused by some other disorder.

Nina

[bamagirl]

I was tested for this at the Mayo Clinic in MN. The pinched the fat on my belly and used a needle to suck some fat out. It is not bad at all compared to the POTS symtoms I have. Anyway, I believe that it is a protein based illness and is very very rare. However, the way I see it, as bad as you are feeling I would let the docs run any test they are willing to try and figure out what is going on. Really the belly fat aspirate is about as bad as a shot. Good luck and let us know how it goes.

bamagirl

[MightyMouse]

Sadly, as mentioned above, many cases of amyloid aren't diagnosed until autopsy. This is how we found out what happened to my grandmother. Up until then, all her docs had her tagged as a hypochondriac.

Here's a good description of the different types of amyloidosis (there are many).

http://www.emedicine.com/med/topic3377.htm

And here's a mayo article

http://www.mayoclinicproceedings.com/inside.asp?AID=235&UID=

[mngirl]

I have to say thank you for easing my mind about this. I wasn't sure how bad it was going to be. Visions of all things bad run through my head. Sad thing is is that I don't have lots of fat in my tummy anymore...I haven't really ate much since Christmas.

The whole test just doesn't sound pleasant. I'll let you all know how it goes. I have an infusion tomorrow AND on Thursday. My doc said that he would have the pathologist scheduled one of those days I come in to do it. So, I will be a little surprised as to when it is going to be. Although that may be a good idea not to know. Otherwise I think that I will just sit there and wonder.

BTW - I am in MN. I was just reading about the center at Mayo. So, if this test comes back positive, I guess I know where I am headed. They diagnosed me with my POTS this past March, so I have a neurologist there, although I don't care for him AT ALL. But anyway...let's hope that this test comes back negative. This is a problem that I REALLY DON'T need, not that anyone needs any...but this does not sound good.

Thanks again for easing my nerves...I hope it is as painless as you said.

~Lisa

I was tested for this at the Mayo Clinic in MN. The pinched the fat on my belly and used a needle to suck some fat out. It is not bad at all compared to the POTS symtoms I have. Anyway, I believe that it is a protein based illness and is very very rare. However, the way I see it, as bad as you are feeling I would let the docs run any test they are willing to try and figure out what is going on. Really the belly fat aspirate is about as bad as a shot. Good luck and let us know how it goes.

bamagirl

[MightyMouse]

If you read the incidence info on Amyloid, you'll see that the most common form occurs about 8 times in a million--way less often than POTS. So, if it helps at all, the odds are on your side. Not saying you don't have it, just that only 8 in one million do...so let's hope you're not one of those folks!

Nina

[HoldOnToHope]

This is very, very, very rare. If you do have it, I'd head to Mayo. I think it's one of their specialties and you'd be in good hands. As for the needle....I had an "amnio" test with one of my pregnancies and the needle in the tummy was not that bad!! Be brave and let us know how things go.