[Judy2]

Sorry I haven't been posting much lately (I have been lurking), but this "lovely" disease has thrown me another curve ball. I don't remember anyone talking about this particular thing before, but if anyone has any info to share, I'm listening!

Remember a few monthis ago the doctor thought I had cellulitis.....well....it wasn't. Instead it's "weeping edema". My legs and tops of my feet are constantly swollen. The lymph that separates from the blood doesn't go back up my legs due to lack of motion because this lousy disease has taken away any ability for them to move. The capillaries become full -- leaks into the skin -- then attempts to escape by causing the skin to break open and the mess proceeds to run down my leg and foot. Yuck!

Some places appear as blisters and others like golf ball size lumps that gradually break open looking like an alien is trying to escape. It feels really squishy when touched. So now I have to wear "Unna Boots" wrapped with Ace bandages all the time. The home nurses from the local hospital come once a week to change them. Tried leaving them off for two days and my legs were more swollen than ever with over a dozen open sores. Of course my legs hurt, feel heavier than ever and my footwear selection is limited to two pair of scuff slippers. My Crocs are even too small. It's also good to keep my legs elevated as often as possible.

Guess this is another way MS has taken my life away. Yeah, I know, trust the Lord, one day at a time, be thankful for small blessings...........but....sometimes it sure is hard to find any quality of life and a reason to wake up each day.

Has anyone who "sits" all the time had any similar problems? Take care....

[Erin524]

I've been having some problems with edema since I had steroids in december for a flare.

I've been wearing Edema Wear to try to get rid of it, but it hasnt helped that much. About the only thing that did really help for me seemed to be when I got my AFO (Ankle Foot Orthotic, brace that helps me with the foot drop the flare gave me) Two days after I got my AFO, and had been wearing it constantly, with the shoe tied fairly tightly, a bunch of the edema came off. Not all of it, but enough that I noticed it.

I'd been sitting a lot since this flare hit, and when I got the AFO and could get up and move around (also doing some aquatic PT) I think being able to move around again without tripping over my foot really helped make some of the edema go away. Just not all of it, and it's really uncomfortable. Wondering if it's contributing to a lot of the numb feelings I have.

Not feeling really good this weekend, so I've been sitting around a lot again. The edema is coming back. It's not back in my feet, but I can feel it around my waist, back and hands and down my legs. Keeping my shoes on seems to help the edema not get out of control in my feet. (AFO is built into one of my sneakers) . I really hate this edema.

[kicker]

Judy,
I've been in a chair for 2 years (I do sit a lot) and on my left "bad" leg, the top of foot is so swollen I can't put shoes on unless they are like ballet flats, nothing up and over swollen top of foot. My PCP has seen swelling before, but doubt in the area of continual wheelchair use. I have been fearful of it bursting open like the weeping edema you describe. Can they drain it with a needle or something? I can't walk, try to move it sometimes and can self-toilet, pivoting to sit using bar. I try to make left foot bear a little weight when I do so. Keep me informed!!

[Kitty]

Judy

I'm so sorry you're suffering. The condition sounds horrible and I don't blame you one bit for feeling the way you do. Seems like there ought to be some sort of pill for this.....there's one for everything else.

[Dejibo]

im so sorry this happened to you My friend has this (and MS) and we havent been able to explain it. She sees her MD on monday. perhaps you helped someone else...thanks!

[SallyC]

Oh Judy, that is just awful. It's bad enough when MS has made it difficult to move our legs and feet, but this horrible side effect of that, is unconscionable. I am so sorry.

Is there any possiblity that a little PT could help? If they/you can get your legs moving, to keep the blood flowing properly.

If you cannot move your legs or feet voluntarily anymore, then maybe a PT could come to your home daily and move your legs for you.

When I was in the hospital in PT, at first couldn't move my left leg much at all. My right leg moved with difficuly and PT moved my left leg for me and soon I was able to move it a little. That is still getting a little better each day.

Ask your Doc, if this could possibly work for you, Judy.

[jackD]

YEP!

I have that ugly "weeping edema" and I DID develop cellulitis and made a quick trip to the emergency room. My white blood count was 31,000.

Right now the BIG bubbles are gone and I do not have the fluid drip. I think that maybe some of the medications and supplements I take might have got me this release from the severe symptoms.

I noticed some improvement shortly after I started taking some ASTAXANTHIN (Jarrow formula 4 mg softgels).

I am taking 4mg three times a day to raise my HDL.

I also take a dieuretic FUROSEMIDE 40 mg twice a day to lower my body fluid level.

I have a very expensive lymphedema pump $6,000 which I could not use because of the infections in my leg. I intend to start using it again now that the infections are gone. The skin is still very pink and feels like a mild sunburn.

jackD


Atherosclerosis. 2010 Apr;209(2):520-3. Epub 2009 Oct 14.

Administration of natural astaxanthin increases serum HDL-cholesterol and adiponectin in subjects with mild hyperlipidemia.

Yoshida H, Yanai H, Ito K, Tomono Y, Koikeda T, Tsukahara H, Tada N.
SourceDepartment of Laboratory Medicine, Jikei University Kashiwa Hospital, Chiba, Japan. hyoshida@jikei.ac.jp

Abstract
BACKGROUND: Astaxanthin has been reported to improve dyslipidemia and metabolic syndrome in animals, but such effects in humans are not well known.

METHODS: Placebo-controlled astaxanthin administration at doses of 0, 6, 12, 18 mg/day for 12 weeks was randomly allocated to 61 non-obese subjects with fasting serum triglyceride of 120-200mg/dl and without diabetes and hypertension, aged 25-60 years.

RESULTS: In before and after tests, body mass index (BMI) and LDL-cholesterol were unaffected at all doses, however, triglyceride decreased, while HDL-cholesterol increased significantly. Multiple comparison tests showed that 12 and 18 mg/day doses significantly reduced triglyceride, and 6 and 12 mg doses significantly increased HDL-cholesterol. Serum adiponectin was increased by astaxanthin (12 and 18 mg/day), and changes of adiponectin correlated positively with HDL-cholesterol changes independent of age and BMI.

CONCLUSIONS: This first-ever randomized, placebo-controlled human study suggests that astaxanthin consumption ameliorates triglyceride and HDL-cholesterol in correlation with increased adiponectin in humans.

Copyright 2009 Elsevier Ireland Ltd. All rights reserved.

PMID:19892350[PubMed - indexed for MEDLINE]


Altern Med Rev. 2011 Dec;16(4):355-64.

Astaxanthin, cell membrane nutrient with diverse clinical benefits and anti-aging potential.

Kidd P.
SourceCorrespondence address: 847 Elm Street, El Cerrito, CA 94530 Email: dockidd@dockidd.com.

Abstract
Astaxanthin, a xanthophyll carotenoid, is a nutrient with unique cell membrane actions and diverse clinical benefits. This molecule neutralizes free radicals or other oxidants by either accepting or donating electrons, and without being destroyed or becoming a pro-oxidant in the process. Its linear, polar-nonpolar-polar molecular layout equips it to precisely insert into the membrane and span its entire width. In this position, astaxanthin can intercept reactive molecular species within the membrane's hydrophobic interior and along its hydrophilic boundaries. Clinically, astaxanthin has shown diverse benefits, with excellent safety and tolerability. In double-blind, randomized controlled trials (RCTs), astaxanthin lowered oxidative stress in overweight and obese subjects and in smokers. It blocked oxidative DNA damage, lowered C-reactive protein (CRP) and other inflammation biomarkers, and boosted immunity in the tuberculin skin test. Astaxanthin lowered triglycerides and raised HDL-cholesterol in another trial and improved blood flow in an experimental microcirculation model. It improved cognition in a small clinical trial and boosted proliferation and differentiation of cultured nerve stem cells. In several Japanese RCTs, astaxanthin improved visual acuity and eye accommodation. It improved reproductive performance in men and reflux symptoms in H. pylori patients. In preliminary trials it showed promise for sports performance (soccer). In cultured cells, astaxanthin protected the mitochondria against endogenous oxygen radicals, conserved their redox (antioxidant) capacity, and enhanced their energy production efficiency. The concentrations used in these cells would be attainable in humans by modest dietary intakes. Astaxanthin's clinical success extends beyond protection against oxidative stress and inflammation, to demonstrable promise for slowing age-related functional decline.

PMID:22214255[PubMed - in process

Mol Nutr Food Res. 2011 Jan;55(1):150-65. doi: 10.1002/mnfr.201000414. Epub 2010 Nov 18.

Potential health-promoting effects of astaxanthin: a high-value carotenoid mostly from microalgae.

Yuan JP, Peng J, Yin K, Wang JH.
SourceGuangdong Provincial Key Laboratory of Marine Resources and Coastal Engineering, School of Marine Sciences, Sun Yat-Sen University, Guangzhou, PR China. yuanjp@mail.sysu.edu.cn

Abstract
The ketocarotenoid astaxanthin can be found in the microalgae Haematococcus pluvialis, Chlorella zofingiensis, and Chlorococcum sp., and the red yeast Phaffia rhodozyma. The microalga H. pluvialis has the highest capacity to accumulate astaxanthin up to 4-5% of cell dry weight. Astaxanthin has been attributed with extraordinary potential for protecting the organism against a wide range of diseases, and has considerable potential and promising applications in human health. Numerous studies have shown that astaxanthin has potential health-promoting effects in the prevention and treatment of various diseases, such as cancers, chronic inflammatory diseases, metabolic syndrome, diabetes, diabetic nephropathy, cardiovascular diseases, gastrointestinal diseases, liver diseases, neurodegenerative diseases, eye diseases, skin diseases, exercise-induced fatigue, male infertility, and HgCl₂-induced acute renal failure. In this article, the currently available scientific literature regarding the most significant activities of astaxanthin is reviewed.

Copyright © 2011 WILEY-VCH Verlag GmbH & Co. KGaA, Weinheim.

PMID:21207519[PubMed - indexed for MEDLINE]

[Aarcyn]

yikes, Judy. Can't add anything to the discussion except for tea and sympathy.

[Judy2]

Thanks to all of you for the support and understanding. I'm really thankful for my family here since you're the ones who "get it"!! My MS-brain won't remember who said what without looking back, but to a couple I do remember.........

Jack -- Holey Moley!!! You've really done your research! Thanks for sharing....it will take a few days to wrap my head around all that info.

Kicker -- Our legs sound similar, I've been "sitting" for almost 6 years. I do the bathroom transfer thing with the grab, pivot, slide feet backward too. Isn't it amazing how much the "tops" of our feet can swell? Never had such a problem before MS.

Sally -- I'm scheduling some physical therapy with the home nurses, mainly stretching and moving my legs. It doesn't help much with the swelling, but it feels good and allows my legs to move slightly better. My insurance will cover it as long as they're coming to care for my legs.

I did have an appointment this past Wednesday with a new neuro who replaced my former doc who retired. Finally have an MS "Specialist"!!!! YAY! As to the edema, there isn't anything else that can be done since it isn't the usual "water" making things swell. Elevating my legs as much as possible does help some.

One of the things we spoke about was my constant nerve pain. Of course there is NOTHING else he can give me for it. I know nerve pain is difficult to treat and along with the fact that I take Coumadin (blood thinner for atrial fibrillation) and Zoloft, eliminated a couple possible drugs, swelling legs, blah, blah, blah, there were no other possibilities to try. So guess I'll just stick with two Aleve a day which kind of takes the edge off.

Also spoke about bladder issues............but that's a story for another day!