I'm back.. again !

[annie from hawaii systemic sclero]

Hi all, I'm back in Hawaii and back online.  I went through quite an adventure living in Los Angeles, but decided to come back to the islands.  Overall, I'm still alive with organs functioning, skin softening, but hands contracted (pinky on right hand getting worse).  My skin continues to darken (which was deemed by dermatologists to NOT be due to mino deposit), and insulin resistant.  Where to go from here?  Just trying to get re-established back here and review latest studies.  Oh….. I also got a new puppy!  He's a hairless chinese crested named Iakona (“healer”).  I was going to name him Chemo.. as in chemotherapy.. but my vet didn't think it was appropriate, but offered the name Iakona instead.  He was one lb when I got him, but now at 5months, he's doubled his weight to 2 lbs!

[Maz]

Annie, what a cute little pup!  I was glad you said your skin softening improvements and new avatar pic didn't mean you'd morphed into a “hairless Chinese crested.” We're hoping that won't be happening to Randy now that he's reverting to a hairy ape-man again. 😉

Congrats on these promising steps fwd and may they long continue!

Peace, Maz

[Kim]

Hey Annie, it's so nice to hear from you and that you are doing OK.  That's a fine attack dog you have there — too cute.

[JBJBJB]

Annie,

Glad to hear you followed your heart and settling down.  I also have problem with skin gets dark and olive green. I will try to stay away from the sun this summer.

I have also developed several really black moles. I am keeping my eyes on them.

JB

 

[Lynne G.SD]

Hi Annie;
     Nice to see you back here.Don't worry about your hands.They will tag along with the rest of you,just take so much longer to heal.Even though I am in total remission,when I get super tired my hands get that terrible aching feeling again.I have a 15 minute nap or a hot shower and they are back to normal

[Parisa]

Is the darkening of the skin all over or only in sun exposed areas???

I recently came across a book by an orthomolecular doctor and he was describing pellagra which is caused by a niacin deficiency.  Pellagra has many symptoms but one of them is darkening of the skin.  My husband has had darkened hands and face for a couple of years now.  I think it 's plausible between the disease and drugs that he could have had a problem absorbing niacin in his diet so we are doing a trial of niacin to see what happens.  We're also going to mention it to the primary at next week's appointment as he was always commenting that this was a clue but he didn't know to what.

[linda]

I love your little companion, especially his name, very beautiful. I also own a cute attack dog, but he's a little bigger at 12 lbs; chihuahua/jack russell and all attitude. Loves people, big dogs not so much. Enjoy your cutie! I'm so jealous that you're back in the islands, I lived there for 3 yrs and loved it, on Schofield Barracks – I was also in remission at the time. Nothing like going to the beach on Christmas day! Where are you, on Oahu or one of the other islands? We got to all of them, my favorite was the big island. If it was closer I would've considered moving back there, but it's way too far away from my kids in Tx and D.C. I don't know what to say about the skin darkening, hopefully you can find out more about what is going on with that when you get re-established. Good health to you,

linda

[Maz]

[user=13]Parisa[/user] wrote:

My husband has had darkened hands and face for a couple of years now.  I think it 's plausible between the disease and drugs that he could have had a problem absorbing niacin in his diet so we are doing a trial of niacin to see what happens.  We're also going to mention it to the primary at next week's appointment as he was always commenting that this was a clue but he didn't know to what.

Parisa, I know you're really well-researched, so this could be pretty moot…but has your hubby had his homocysteine levels checked recently? Apparently, niacin (B3) supplementation can elevate homocysteine and, by default, precipitate artherosclerosis.

http://www.mayoclinic.com/health/niacin/NS_patient-niacin

Folic acid (B9), on the other hand lowers homocysteine levels:

http://www.americanheart.org/presenter.jhtml?identifier=535

Just wondered if this might be important to check with your doc and perhaps balance with B9 supplements? Men in middle age seem to be prone to elevated homocysteine. My hubby has this problem and he takes pharmaceutical grade folic acid to control his levels.

Peace, Maz

[Parisa]

Thanks, Maz, we'll look into it.

[Author]

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