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Permalink Reply by Nuni Ta on May 14, 2013 at 5:33am

try to go to other doctors or try alternative medicine. For some people works, not for me though!

Good luck :)

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Permalink Reply by Lori Van Decker on May 14, 2013 at 3:09pm

Maybe what the doctor is saying is that there is no cure. From my experience, that would be the case. But they might be able to treat the symptoms and get you some periods of remission.

Kenalog injections kept me at tolerable stages of AA back in the late 1970s to early 80s, until I stopped them because it was not working as well as it did earlier. I did not want to prolong steroid therapy without seeing any result. So, shortly after stopping the injections, all of my body hair fell out. That was around 1985, and I have never had a remission.

That said, there are others who have had the shots and experienced long periods of remission and AA that is controllable. There are others who have done nothing -- no treatment at all -- and have gone into long periods of remission all of a sudden. I think it's pretty rare, though.

I have to agree with what the others have posted...see a different dermatologist, if you can. You might want to give up eventually, but I would think that you would want to feel certain that you did everything that you could.

Good luck with whatever you choose!

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Permalink Reply by laurenmaitland89 on May 14, 2013 at 4:45pm

Thanks for all your advice guys. I'm limited to what i'm able to do as i live on a small island. I'll give the doc another shot. At the moment i can cover it easily, however i've just noticed tw more spots at the top of my head. You know that feeling, when your heart sinks a little more!

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Permalink Reply by Tovah on May 14, 2013 at 4:59pm

Hi Lauren:

Regular physicians do not know or understand alopecia.

You need to find a specialist or an endocronologist that has an expertise in this.

Before you spend alot of money on things that won't work, try finding someone that can really help you, especially if you have not had it for that long.

All my best,
Tovah

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Permalink Reply by Bridget F on May 15, 2013 at 11:54am

I just posted this in another discussion, but it's relevant here too.
It is extremely important to get blood work done, but more often than not, MD's do not do as thorough a blood test as you need. Rarely do they do a full thyroid panel and even if they did, they treat it the same way they treat other thyroid issues which is to prescribe medication. I recommend that you stay away from specialized medicine since they do not look at the body as a whole and go to someone more holistic in their approach to healthcare.
I am a 35 year old mother of two young boys and I started losing hair in patches about 8 months ago. I lost half of my left eyebrow and shortly there-after, found a large bald spot on the back of my head. It progressed to between 7 and 8 bald spots and I had many other symptoms as well, like fatigue, irritability, depression, pale skin, weight loss, and more. I went to a Functional Medicine doctor who is a chiropractor as well as a board certified internist and he did extensive blood work on me. It was discovered that I had Hashimoto's, low ferritin, and active Epstein-Barr virus. It is well known that when you have one auto-immune disease you either have or will get another. He told me to go completely gluten-free because of the hashimoto's and he started me on a lot of herbs and supplements. Before I had these blood test results I had continued my search online for anything to help with the hair-loss. I came across the product "Calosol" from the UK which is amazing. Between using Calosol and taking the herbs and supplements from my doctor, I am experiencing complete hair re-growth. My largest bald spot is completely filled in and my eyebrow is almost all back. All of my smaller patches are filled in and the short hairs are now about 3 inches long. On top of that, I feel better than I have in years. I don't care what anyone says, AA is not a benign condition. Your hair does not just fall out unless something is going wrong in your body. If you're interested in seeing the Functional Medicine doc that I go to, his name is Dr. Nikolas Hedberg. He is located in Asheville, NC but has patients as far away as Australia. Just google him and browse his website. He treats the whole body finding the root cause of your hair-loss or any other symptoms that you have. Between going to see him and using Calosol, my hair is back and I believe it's back to stay!

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Permalink Reply by Sharon on May 15, 2013 at 10:36pm

Very interesting post. Can one see this doc without being in NC and is he costly.

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Permalink Reply by Bridget F on May 16, 2013 at 7:17am

Yes, he has clients/patients that he sees via skype or by phone if they can't come to Asheville. It is a bit costly and he doesn't accept insurance, although your insurance may reimburse you. The visits themselves are not that expensive with the exception of the first two. Those are higher because they are longer and require an in depth look into all areas of your life. What I found to be most costly was the supplements. You don't need to buy them from him. but I do because he has the best quality and he doesn't mark up the price. Feel free to call his office and talk to Tonya. She is a very nice woman and can answer any questions you have. 828-254-4024. It was and is worth every penny. If you would like to talk to me, message me in private and I'll send you my phone number.

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Permalink Reply by Dina on May 17, 2013 at 4:50pm

Well, I live in the US and when I was diagnosed with this disease going back around 13 years ago now, my dermatologist told me the same thing - there is no cure. Of course there are things you can try but keep in mind, there is no cure. I have tried several topical treatments and none of them did anything and one caused my heart to beat fast which was a rare side effect, of course I had to be one of the rare cases lol. As with any treatments, you will have to be vigilant with them and then they can stop working at anytime as well. I hate to sound like a bummer but really I have come to accept the disease and I am not one who is keen on taking meds if I don't absolutely need them. Let's just hope a cure comes around soon but let me tell you I wasted thousands of dollars on creams and lotions etc., they don't work, if there was something we would know about it.

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Permalink Reply by laurenmaitland89 on May 17, 2013 at 6:25pm

Hi Dina. Thanks for your comment. My alopecia started just over a year ago and i've already spent a lot of money on things that don't work. I wonder if my alopecia is due to stress as i have has family problems the last couple of years and i just can't seem to get away from it. I am feeling like just giving up as i know the alopecia is going to do what it likes! It's a horrible thing to have. I'm just glad i joined this forum x

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