Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Blood diseases an apnea anyone?

Thanks Cheryl. I have a great view -- this is from my living room window (although I drove east, into the desert a mile or two, to get these). Today I'm going to try to make them shorter -- too big.

Patty



Sunset, Dec 27th, 5:00, and 5:10 p.m.

Wanted to clarify on a posting in this subject I made a few days ago. I stated the REM sleep was ( i thought) the deepest part of sleep. We went over my sleep study and REM sleep, the time that you dream is the lightest part of the sleep process. An interesting fact that during dreams the body is paralyzed! Not sure if anyone knew this or not and I found fascinating. It is the bodies way of not allowing the person to "act out" the dream. In some cases people wake up from their dreams still paralyzed which can be quite scary.

I appologize for the misinformation earlier.

Apnea is related to a whole slew of other health problems such as high blood pressure, stroke, heart attacks, confusion, poor concentration and is more common in adults as asthma. 18 million people suffer from this and 25% are being treated. With any luck in the next few weeks I will see a huge difference in my sleep and in my energy levels. If it does make a big difference, you can bet this GimpyAs will be jumpin for joy!! /me checks to see if there is a "Joy" listed in the forum anywhere. Don't want her getting worried that I meant her!! LOL!!!!!!


Bob

Beauty is in the eye of the beholder. Behold the beauty of Orca Art

Did your machine arrive today? I think you said you'd have it today? Yes, I learned in psych that we are paralyzed during dreams. The only other thing I remember that semester is that short-term memory is only about 20 seconds. People misunderstand that and refer to what they did that morning, and if they can't remember, they say they have poor short-term memory. An example of how we use it is when we are given any info (such as a phone number) and we either memorize it (thus putting it into long-term), write it down, or if we don't do something with it FAST, we forget it. That's why accident victims often can't remember the last 15-20 seconds before an accident -- it didn't get stored away -- suddenly something else interrupted the transfer, and they didn't finish processing it. (We need a "Fascinating Facts" board!)

Good luck with the machine, and tell us all about it!!!

Patty




Anne Geddes work, of course -- she does the most amazing things with babies!

Hi all

Wish I had read this post sooner. Not a link to AS but an interesting note. I have AS My husband has Haematomachrosis.
This is a huge iron overload. Worse even than Diabetes, if not detected it will eventually be fatal. By the time Alan was diagnosed his iron levels were enormous. It leads to diabetes, ARTHRITIS, malfunctioning liver enlarged spleen, risk of liver cancer etc................
The cure is to get bled weekly until iron levels are reduced. Alan has been doing this for a year now and has been very poorly.
To tell the truth maybe this post dosn't fit too well in this thread but it feels darn good to get it off my chest. I have been getting increasingly worried of late because Alan seems to have more sick days than well days. He looks like hell and I am getting scared.
He has a specialist who takes many long vacations so Alan has to wait for his return to be bled again.
I keep at him to get another specialist but he dosn't do it.

Sorry I'm rambling - it felt good
Thanks

Maggie

Hi Maggie,... wow that sounds awful. I'm not sure I understand,... do they think once these levels of iron are reduced that it won't happen again? Are they aware of what causes it in the first place? Sorry to hear he has been having such a rough time.

Hi Bob,... I was also wondering if you got the CPAP monday! Maybe you're deep into a great sleep right now! Hope so,... let us know!

mig

Hi Mig and Patty,

FIrst night on the machine was a little rough. The AS was making the body pretty sore and ran out of celebrex about 4 days ago. Got them today and hopefully tonight will be easier. I made myself not take a nap like I usually do in the afternoons and I should zonk right out and finally get a good rest!! Will let you know what happens!!

Bob

Beauty is in the eye of the beholder. Behold the beauty of Orca Art

Hi Bob!

Yes, sleeping is tricky enough with apnea, let alone adding AS into the equation! Hope you get accustomed to it quickly. I love sleeping with the white noise it creates,.. it sounds just like waves rolling into shore. I bet your wife will end up liking it too!

mig

Hi Maggie,

Sorry to hear about this Maggie. Who is this enigmatic specialist who's so busy not being around? It doesn't take a specialist to do the blood letting, and he certainly shouldn't be charging you specialist rates for the mere *honour* of his prescence. The procedure itself is exactly the same as what a blood donor would experience, it's not high tech stuff and I can't understand why he's not arranged for Alan to be getting this done regularly. The blood letting is usually done weekly for up to two years, then less often, so head with your instincts and get fresh medical eyes on this Maggie. (Tell Alan he will have the force of KickAS to kick his butt all the way there if he doesn't do it of his own volition. Fair deal I think?!!)

Alan's problem is primary haemochromatosis. Secondary haemochromatosis often results from multiple blood transfusions and is managed by a drug called called Desferrioxamine, an 'iron chelator' that binds excess iron to it. For secondary it's usually given in an infusion following blood transfusion, and often afterwards a small portable syringe pump can be used to give a dose over say 12hrs, from a few to several days a week. It does come in tablet form too, but there has been some debate over which method is more effective, and at present it's swinging towards the tablets. (Hang in there Maggie, I'm getting to the point, honest ) In some cases of primary haemochromatosis where venesection (blood letting) is containdicated, Desferrioxamine is often used.

Whilst obviously the venesection is the treatment of choice, the deferrioxamine might be something to consider in the interim, to fill the gap from now to you both finding the right person to be treating this effectively.

Good luck in your quest Maggie,

Keep us posted

Take care,

Jan



Ta yn aigney hene eck dooinney agh ta y raad bene eck ben.

A man has his own will, but a woman has her own way

Thanks for answering Jan.
PM'd you

Hi Bob,

I just dug out your post again, because today the doctors told my husband he has got polycythemia. They took a bunch of tests to see what the underlying cause could be.

When I got home I remembered: "Didn't I read about this on the Kickas Forum?"
I had never heard of it before I read about it in your post, and thought I never would hear about it again. But now it's also here with me...

I'm a bit scared, do you have some additional info besides what you have told us here?

You can PM me if you rather like that.

Bye from
Jade