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I finally have a diagnosis after 11 doctors
Hi everyone. Well it took me seeing 11 different medical professionals including 4 dermatologists, endocrinologist, internal medicine specialists, allergist and the dermatologist I saw today.
The only dermatologists that I had been able to get into see up until today were all male. I found the experience of seeing them intimidating and not very helpful because they couldn't understand the emotional stress I felt being a female. They all believed it was in my head and told me that I could use Rogaine if it made me feel better. I finally got in to see a female dermatologist in my town that I had been wanting to see but was unable because she was out on maternity leave. Anyway, she was great. She looked over my labs and was so considerate of my feelings and the fact that I was uncomfortable with people touching my hair and scalp because of the pain and shedding. She was so kind and had me move my hair around so she could look. It didn't take her more than 5 minutes to say that I had two issues going on. The first was that I had Chronic Telogen Eflluvium along with something called scalp dynea. I am not sure of how to spell the last word but it is similar to scalp dysthesia.
I have been doing a lot of research on Chronic TE and apparently there are 3 different types of TE. The worst is Chronic TE because it involves more shedding over a longer period of time. It can come back and apparently can eventually turn into alopecia. I pray that it doesn't turn into alopecia, but at least I already have the support I need from all you wonderful people if that is the case. There is no treatment. She said that it could have developed from several factors in my life. The first was my eating disorder and being severely underweight for the past 18 years. The second was the stress level and my anxiety and panic disorders that can trigger hair loss.
The scalp dynia she diagnosed me with could have been from when my hair was violently pulled or from my underlying psychiatric issues with the eating disorder and panic attacks. In short, the nerves in my scalp were somehow damaged and are misfiring causing burning, itching, crawling and sensitivity sensations. She recommended a low dose anti-depressant and said Doxepin has worked well in others.
I am just relieved to find ONE doctor that was at least brave enough to put a diagnosis out there. The other dermatologists just kind of sat there dumbfounded and lost and were insensitive. I am glad that I at least know IT"S NOT IN MY HEAD!!!! Now, I have to try to eliminate stress, work on my eating and gaining weight and find a way to continue to deal with all the emotional crap involved with losing your hair...
I want to thank all of your for your kindness and encouragement... I have not been handling this well and I am sure I will need continued support from whoever is willing! Love you all...
The only dermatologists that I had been able to get into see up until today were all male. I found the experience of seeing them intimidating and not very helpful because they couldn't understand the emotional stress I felt being a female. They all believed it was in my head and told me that I could use Rogaine if it made me feel better. I finally got in to see a female dermatologist in my town that I had been wanting to see but was unable because she was out on maternity leave. Anyway, she was great. She looked over my labs and was so considerate of my feelings and the fact that I was uncomfortable with people touching my hair and scalp because of the pain and shedding. She was so kind and had me move my hair around so she could look. It didn't take her more than 5 minutes to say that I had two issues going on. The first was that I had Chronic Telogen Eflluvium along with something called scalp dynea. I am not sure of how to spell the last word but it is similar to scalp dysthesia.
I have been doing a lot of research on Chronic TE and apparently there are 3 different types of TE. The worst is Chronic TE because it involves more shedding over a longer period of time. It can come back and apparently can eventually turn into alopecia. I pray that it doesn't turn into alopecia, but at least I already have the support I need from all you wonderful people if that is the case. There is no treatment. She said that it could have developed from several factors in my life. The first was my eating disorder and being severely underweight for the past 18 years. The second was the stress level and my anxiety and panic disorders that can trigger hair loss.
The scalp dynia she diagnosed me with could have been from when my hair was violently pulled or from my underlying psychiatric issues with the eating disorder and panic attacks. In short, the nerves in my scalp were somehow damaged and are misfiring causing burning, itching, crawling and sensitivity sensations. She recommended a low dose anti-depressant and said Doxepin has worked well in others.
I am just relieved to find ONE doctor that was at least brave enough to put a diagnosis out there. The other dermatologists just kind of sat there dumbfounded and lost and were insensitive. I am glad that I at least know IT"S NOT IN MY HEAD!!!! Now, I have to try to eliminate stress, work on my eating and gaining weight and find a way to continue to deal with all the emotional crap involved with losing your hair...
I want to thank all of your for your kindness and encouragement... I have not been handling this well and I am sure I will need continued support from whoever is willing! Love you all...
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Comment by Julie Koch on September 7, 2010 at 7:45pm
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Thank you Dom for your information. I am hoping that it will reverse itself, but if it doesn't, I am on an amazing site with wonderful people to help support me and get through whatever comes. Thanks so much and I hope you are well!
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Comment by Galvin on September 7, 2010 at 8:01pm
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Oh my God! You ought to send a copy of this to the American Medical Association and
New Journal Of Medicine.... I stunned it would take ELEVEN DOCTORS!
I'm happy for you finally finding someone to help.
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I know, right? Unbelievable! Whenever I brought up the topic of my severe scalp pain, they all looked at me like I was crazy because they couldn't SEE it. They told me it was just from stress and my obsession over losing my hair. They told me it was in my head and made me feel like I was crazy. That is, until this doctor. She immediately gave me the diagnosis of Chronic TE and the scalp dynia. She put a name to what I was going through and I finally got the satisfaction of knowing it wasn't it my head. It's amazing how little doctors actually know sometimes. I had diagnosed myself with this months ago, but no one would listen because it wasn't something you could see with the naked eye. Well, duh... You can't look at me and know that my nerves are misfiring causing me severe pain. At least I have a tentative diagnosis now and can start to deal with the emotional aspect. Thanks Galvin!
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Comment by letcia Parga on September 7, 2010 at 11:41pm
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That is so great and I'm sure such a relief for you . I know how it feels to be a woman and lose their hair and I'm grateful to have gotten such a supportive doctor. She actually prays for me ( I'm christain) at the end of each appointment . I also suffer from panic and anxiety and depression , and am now on a antidepressat , celexa been taking for about a week so I hope it really helps. I really hope your hair returns .
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Comment by Chefpam on September 8, 2010 at 5:33pm
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I am glad you found someone who understands. I know all too well what you are talking about. I have given up on finding anyone who understands in the medical field. I have begun seeing a holistic dr. I am eating more protein and stopping meds and replacing them with natural alternatives. I too have the burning sensitive scalp. If I have CTE it has been going on and off for over 22 years. I hope your body recovers soon sweetie.
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Thank you everyone! I am hoping that this is a FINAL diagnosis. I am so sick of doctors and hearing it's in my head! It is also scary though. They said my body could recover but since it's in the chronic stage it could also become alopecia or just continue to keep falling out. It's a waiting game now. The scalp pain is still very bad and discouraging but I have made it through each day so far. Hair loss is also a bit worse. Have to keep pluggin away, I guess. Love you all...
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Comment by Lori on September 10, 2010 at 4:26pm
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Congrats on finally getting a diagnosis! I hope it calms down for you.
For what it's worth, I've tried yoga a few times over the years but it never really clicked. Since the hair loss started, I found a yoga teacher that is fantastic - she has a very calm, soothing voice and leads a calming meditation at the end of each class. I haven't had a class in over two weeks, and I'm pretty sure I can tell anxiety-wise. It might be helpful for your anxiety, as Sheilagh mentioned. Good luck to you.
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Thank you for sharing Alice. My CTE has lessened and my shedding has lessened even though my stress is very high because I developed seborrheic dermatitis on my scalp and nothing seems to help it. I still have the severe scalp pain and was taken to the pain clinic. THey wanted to give me injections in my scalp that would numb my scalp for several months at a time. I was so excited but my insurance denied it. We are in the process of fighting the insurance company now. I can't live like this and be happy. I lost about 40% of my hair but I would give the rest of it up for some relief from the pain and seb derm. This is going to be an ongoing battle and I am not looking forward to it. I too am supposed to eat around 80 grams of protein a day but because of my anorexia, it makes it difficult to eat that amount. My eating was going OK until this happened but because of all the pain, I just don't want to eat anymore. I am losing all sense of myself and am so mentally exhausted. If you would like to talk more, please add me as a friend if you aren't already and contact me anytime!
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Comment by Sar90 on August 20, 2013 at 1:43am
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julie, try spraying your scalp with organic apple cider vinegar, it made all of my seborrheic dermatitis go away! at first my dermatologist gave me fluocinide and that made them go away fast, it's a topical steroid, but you're not supposed to use it for more than two weeks, but my dermatitis kept coming back, so i researched a lot and tried many things and the only thing that worked was spraying my hair with apple cider vinegar. i have a small spray bottle i fill with half vinegar and half water, and just spray my scalp once or twice a day whenever i brush my hair :) works marvelous! still get a pimple here or there, but cleared up a lot!
I'm still losing hair though :(
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