Green-lipped mussel powder

Hello All,

     I had a scalp biopsy and was diagnosed with FFA about a week ago.  Was very upset (duh)!  Was called with the results by a very sweet nurse who really couldn't answer any of my questions.  I had to call and insist on an appointment to see my Dr.  Glad I did.  Went in with about 10 questions and got answers to most of them.  Summary...yes this is an autoimmune disorder, they don't know what causes it, yes, there are varying degrees of severity (happy to report my case is apparently slow and relatively mild YAY!), doesn't recommend the steroid shots as affected area is too large, doesn't recommend any special shampoos, does recommend the steroid solution (or foam is you're rich).  I am starting the steroid solution.  

     As for the green-lipped mussel powder...this is a product I started taking about 2 years ago for inflammation in my whole body due to 50+ years of dancing and teaching ballet.  It was a miracle for me.  Reduced the inflammation I had in my ankles, knees, feet etc.  I feel 15 years younger in my body now.  I asked the Dr. if she had heard of it.  Had not.  I'm wondering if the reason my case of FFA is mild is because I've been taking this supplement.  I will keep taking it for my body in any case.  I stopped once for a week or two and the aches and pains from inflammation returned.  The product I take is out of New Zealand, the only place in the world that Green-lipped mussels live.  I take the powder form as it is a LOT more potent than the oil variety that is also for sale.  I just wanted to share this in case it might help any of you.  

     Finally, I appreciate having this forum.  It does really help to know that I am not alone in this.  I'm going to do all I can to slow/stop this hair loss.  But, if I can't and end up bald, I've decided to just get a really good wig and keep on living my life.  Best to you ladies!

Danceflyer

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Replies to This Discussion

Permalink Reply by Celia on November 15, 2013 at 4:53am

Hello there and welcome.  So sorry you have FFA, it certainly changes your life - the trick is - not to let it change YOU.  I wonder who introduced you to the mussel powder ? Have you got a dermatologist who treats people with this disorder ? You will find a lot of helpful info on this forum.  Good luck and - keep communicating !

 

Permalink Reply by Debs on November 15, 2013 at 8:33am

Hello and thanks for your info on green-lipped mussel powder.  Quite a few of us are using turmeric supplement as this is proven to reduce inflammation in other auto immune conditions (ginger also has the same effect, I take both!) so it may well be that your body is already fighting inflammation because of this supplement and your FFA has taken a milder form.  I will check this out and see if it is available in the UK.  You sound quite upbeat after the shock of this diagnosis, I hope you can continue to make the best of it... this condition takes one by surprise I think and we have to adjust as best we can and not beat ourselves up if we have times when we do feel down.  Welcome to the group.

Permalink Reply by Danceflyer on November 15, 2013 at 6:04pm

Hi Debs,

     Thanks for the encouragement.  I appreciate it.  I learned about the supplement on a TV infomercial.  It was for a different company than I order from now.  I order it directly from New Zealand where this company in based.  Thanks for the info on turmeric and ginger.  And thanks for the welcome.  It's good to have "company" in this situation. :-)

Permalink Reply by Danceflyer on November 15, 2013 at 6:08pm

Hi Celia,

     I found out about green-lipped mussels on TV.  Don't order from that company though.  And, yes, I have a dermatologist who is treating me.  She seems to be quite "with it".  Ordered a scalp biopsy the first day I saw her.  No messing about to see how things went.  She is also not pushing me to take plaquenil.  This is good as I really don't like RX drugs.  I prefer a more natural approach to me health.  I also have acupuncture monthly.  It has really helped my overall health.  I plan to tell her about my diagnosis next week.  Will keep you all posted as to what she says.  She is really great. Thanks for the welcome...means a lot.

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