Hi Andrea, I just came across your page and I can totally relate to your story, I was reading your posts between you and Christine and I am struggling with my rheumatologist between Psoriatic arthritis or Lupus disease. You should join my group I started called M.A.D. for people with multiple autoimmune diseases. I’ve noticed that a lot of people on AW seem to have two or more autoimmune diseases. Well besides all of these problems I hope everything else is going great for you. Take Care!
Hi Andrea, yes I'm very much praising the Lord this day! I had read something about the fish oil too, so I had a few up in the cupboard and started taking one a day, I am out but will go buy some more, I know that fish oil is so good for us in so many other ways, I'm glad to start something I should have been taking anyways...this just gives me more incentive. My eyes are better, but can't cry still, and seemed to get a bit worse, think I was slacking on the artificial tears, as long as I can see, to work and do what I need to. I'm ok with where I'm at right now, I know that
God is in control, and it is in his loving hands...God bless you again Andrea!
Hi Andrea, thank you so much for the prayer, you and others have been so faithful, My test came back negative for Sjogrens and I am so relieved, they do not have and answer for the eyes, but right now I don't care, I made a deal with God, that I would strive to not always think the worse, every time something weird happens to me, I always think its some horrid auto-immune disease, Ive been in fear of them for so long, I'm so crazy about it, when the soles of my feet became supper itchy, and still are, I found a awful disease called primary biliary cirrhosis, and was just sure I had that, (you basically die from liver failure) when I got a bad pneumonia that took 4 months to clear and left me with Asthma, a pulmonologist told me she believed I had Sarcoidosis, (an auto immune that causes your lungs to fail) now every time something rears it's ugly head I'm sure it's because of that. Talk about a spiritual attack. Its almost turned me into a hypochondriac, I'm going to do my best to move on past this, I just keep praying that these crazy symptoms I keep having will quit doing a number on me, and sending me into a tailspin. The niece that I told you about talked to me today and said, the test will probably come back negative, mine always do too, she struggles with fear too. Again thank you Andrea, I will pray for you again tonight.
Thank you so much Andrea, so sorry to hear about the Lupus, My niece was told she had lupus a few years back, her ANA levels were unbelievable, she was sent to a specialist who gave her the diagnosis, low and behold she has been told you don't have lupus now, and her blood levels are normal, so as you can imagine Lupus was in the back of my mind, I have read that Lupus and Sjogren's run hand in hand a lot of time, funny my niece has alot of symptoms of Sjogren's too, her eyes get dry at times, not quite like mine (tearless) but her salivary glands keep swelling?? They took a bunch of blood from me on Friday, and I'm expecting to hear this week sometime of the results, honestly I hope I don't have Sjogrens, and my eyes are doing much better, although cant cry still :-( I feel like alot of the things that go wrong with me are weird, I bet you feel the same, sometimes, everyone I've told about my eyes are so shocked, oh my gosh they say "I've never heard of such a thing" just what they all say about my Alopecia...frankly I've never heard of anyone whose eyes were so dry they couldn't cry tears either, lol oh by the way I saw the film that Chris Rock did too about Good hair, my goodness it sickened me that these women were "sacrificing" their hair literally at the temple, and the guy would go gather it all up and cash in on it, I think they use Indian hair primarily to make wigs? I didn't see the whole film, but got me thinking too. Thank you again for the response to my dilemma, have an awesome day, I hope you are doing well, thank you for the prayer, I'm sending up one for you, that God will heal you!
Thanks a lot Andrea for sharing your story with me. It is true the guy will love me for who I am and not for what I look like, and if not, then he is not worth it. I am sure the problem is not him, but me, being so uncomfortable with my situation, like being ashamed. Some other time, I'm just like whatever, nobody cares about that, my parents my friends they love me and they don't care, so it should just be the same for him...if not then: next one ;-) I love this website because it helps to share how you feel with other and to hear other people stories! Thanks again!
How did you discover your disease? Do you think it’s possible for a doctor to confuse alopecia caused by Lupus with AA? I’m asking that because my alopecia areata is atypical and I’m dealing with all kind of other disorders witch doctors can not diagnose: breathing problems, abnormal local reactions after vaccines, sunlight allergies, etc. Doctors exclude the possibility of having Lupus because of normal results for basic blood tests (HLG, VSH, PCR, ASLO, fibrinogen). Based on what test were you diagnosed and what doctor have you seen?
Thanks so much for the words you wrote on my blog. I'm glad to hear your hair has slowed down so much on the falling out end! :o) I can't wait til that happens to me, but until then I think I'll keep it VERY short, or bald.. not sure yet. I wish I'd have thought of putting a cap in the freezer, like you suggested! I was at work all day, and when the numbing wore off, boy does it hurt now. I'm hoping that I can at least get some sleep tonight, but since I got the shots all over, I'm not looking forward to my head hitting the pillow. :o(
Hope you are having a wonderful holiday season! And best wishes on the new year! :o)
Hey Andrea! Thank you for your comment! I am so sorry you are having medical problems. It can be soooo difficult to understand and deal with. The last doctor I went to actually said he thought I was making some of this mess up...UGH! YEAH RIGHT buddy! I definitely will not be seeing him again! Last thing you need is a doctor that will not believe you! They have checked my ANA, ESR and rheumatoid factor multiple times and think it is mainly thyroid related. It is amazing how one little gland can make you feel sooo horrible :( I hope you get some answers soon! God Bless!
Thanks for the complement on my wig. No, it's not new! It's six years old but it looks like new! I got it from Brenda Kay Hair Specialities here in Portland. Brenda Kay is the BEST!
I have three of hers.
Glad to hear you will find out soon about any other possible tick infections from Igenex! Please fill me in once you get that info.
Lupus- I recall being tested for that too- ( did you have an ANA test?) Although I did not think I had it- it was just one of those conditions that could explain AA. Sounds possible in your case given your positive experience with steroids. I do remember my doc who did the test for me telling me that if I was Lupus- then once treated the AA should go away too. Hang in there- I'm sure the "hunt" will be over soon... (easier said than done, right?)
WOW- thanks for my flower- no clue how you did that! I love it! Thank you Andrea.
gosh- I'd be upset to catch a doctor in a lie! Big or little- there is no place for that. The specialist I saw actually wrote a book about lyme disease- it a good book...lots of good info! He believes that most of the tests for tick born diseases are poor.. BUT that the best lab to use for testing (and esp. the co-infection) is Igenex in CA. So he sends the blood work across country!
Over the years dealing with AA I've seen many specialists- and have had lots of blood work to rule out other conditions that can correlate with AA.... you may have already had all of them- but if it would be helpful I can put that list together for you to run by your doctor. I just hope you get to the bottom of what's going on with you soon...so you can be on the road to recovery!! :)!
I just read your profile. Sorry you having such a tough time right now. I'm sure it is so frustrating not knowing what is exactly going on!! I just was curious- I also had lyme disease in 03...and I saw a lyme specialist (who know they even had those!!!) and one of the things he said that most doctors do not do is test for other tick born co-infections. Have you had any of those tests? Just a thought.....
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