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Tue Feb 28, 2017 9:24 pm  |
| Yola4 wrote: |
| boafriend wrote: |
It's been a while, but thought I'd provide an update. The rheumatologist I saw wasn't able to help. He ruled out lupus, but with further bloodwork, was only able to find that my ANA is still positive. So I have some sort of autoimmune thing goin on inside me, but he was unable to determine or do further testing with it. He tried recommending me take a medication but I don't want to rely on random heavy antibiotics.
I guess I have really come to a standstill with everything. I tried eliminating all sugar, gluten, and grains for 3 weeks to see if my twitching, tremors, and zip zap sensations would stop, but unfortunately no. While sensations did lessen quite a lot at the start, by the 2 week mark, everything was coming back. Scarring wise I don't really notice any new scarring per say, but my face still looks absolutely horrendous, esp under overhead and yellow lighting. My cheeks look puffy and with many scars...
I'm guessing by the dead ness of this thread, there isn't help out there. This really sucks. |
I've been lurking around this site for many years now. I had to post because your story tore at my heart strings. I could sense the sadness and dispair in your writing. I know all too well what it's like to search for answers and be dismissed by doctors; to go from Doctor to Doctor and not get any better; to have many blood tests and diagnostic tests done to no avail; to have hope and then have that hope ripped away from me. Believe me there are people out there who know your pain. Who don't think your vain or crazy...
I know that you haven't posted here in quite some time, but I was wondering how you're doing? I read the whole thread and it was very interesting. I was hoping that there would be a happy ending. I, also have an autoimmune condition and I wanted to see what treatment you have undergone, if any. I have managed to get my immune system functioning properly without the use of methotrexate or other harmful medicines. The only issue was that I developed two other problems before getting better. After reading your story, I'm worried about you because you aren't treating the underlying problem. One autoimmune disease often leads to many others. Like you mentioned, finding the root cause is the key.
Hopefully, you will come back and update us. I hope you (and all of the other people who commented and said they have the same symptoms) are better now. |
| Finding Health wrote: |
Hi Yola, Im thinking its an immune issue as well, takes time to balance what is not been in alignment for a while. Can I ask if you had the same skin issue? you mentioned that there was a few things that happened health wise till your immune system was corrected. I also think Histamine Intolerance might also be what is aggravating these skin conditions, causing inflammation, which again goes back to a compromised immune system. Glad things worked out for you and your health is in optimal peak  I will also Re-post some information in hopes it helps others with their health.
Jesus Bless you and all those struggling, health truly is the key, we dont realise how blessed we are till it knocks on our door, but knowledge is power, and we can use it to turn all things around |
Thank you both for the kindness and words. Yeah, I vanished from this board and Acne.org for a while because of the agony from all this. It seems that my skin isn't spontaneously scarring anymore, although I also don't really check anymore. The overall texture is still unsightly in the right lighting. I have sought out treatments of Laser Genesis, a very mild and gentle laser, for half a year now. It's helped a bit I would say, but I am seeking more drastic improvement, so I will be considering professional microneedling maybe come spring or summer. It's a lot of money to put down, but I'm just doing what I can to make my skin look better again.
In terms of a root cause of this skin scarring and the odd twitching/buzzing sensations, that unfortunately just hasn't been found. I've spent a little over half a year now going to a Chinese herbalist and acupuncturist. I didn't bring up my spontaneous scarring to her, but her diagnosis in regards to my twitching/buzzing is that my liver and kidneys were overloaded with toxins and that my body was exposed to an excess of "cold," leading to an imbalance overall. I know it may sound like bull to some people, but I just took it for what it is. I've been on weekly herbal medicine for a long time now, and while my twitching isn't 100% gone, the sensations overall have lessened.
I agree with the histamine intolerance as noted by Finding Health, as an allergist I saw a few years back said the same thing. However, he couldn't offer any treatment in regards to that aside from taking an anti-histamine every day. In regards to the rheumatologist's findings, I never did any further blood tests or anything. I just figure there are too many obstacles in my life right now (I'm in my late 20's, still figuring out a career, personal life, self development and discovery, etc.), and I just don't have the time or patience to go to more docs, at least Western ones (from 2013 to 2015 you have NO IDEA how many blood tests I have had done). Health is always #1 but, sometimes you gotta just take things for what they are. Even with the detection of some autoimmune issue in my body as noted by the rheumatologist I saw - what can I do? He even noted he didn't know of any treatment aside from heavy antibiotics for probably the rest of my life. Def a no.
I surmise that this ALL has been a VERY slow detox and a slow sluggish rebuilding of my immune system.
Just as a breakdown of what had happened so many years ago in case anyone doesn't wanna go back to page 1 (I probably have more details here than my original post anyways):
July 2012: Serious food poisoning in Taiwan (cause or culprit food unknown), diarrhea for 3 weeks straight.
Under a compromised immune system, I was given LOADS of antiobiotics from 3 different doctors. At the 3rd week mark, the diarrhea eventually subsided.
September 2012: Back in the USA. After a few weeks or so, I noticed a random small indented line on my face, freaked out, but it eventually went away. Had some bad cystic acne and took doxycycline for an entire month or so, ending in October and never taking it again.
March 2013: Full on spontaneous scarring on what seemed like a daily to weekly basis of new pits, divots, linear indents, and scars on my face.
April 2013: Prickling, twitching, buzzing sensations started from legs. Eventually worked up to my face and scalp.
In summary, again, just definitely had something to do with that horrid food poisoning episode. I more or less unknowingly was harboring a very weak immune system and never had my body re-nourished with probiotics or anything. The doxycycline probably became toxic. These issues (esp the skin scarring) stressed me out SO much, probably wrecking more havoc on my immunity. It's been a tough and dark ride, really.
I hope anyone else who has experienced all this can chime in or others can give updates. I'm not 100% better but am trying to take life as it is now and not let all this tear me to pieces like it did in 2013. It was the darkest and lowest time in my life and I never want to be back there again. |
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Mon Aug 28, 2017 9:13 pm |
I wanted to update despite the lack of activity in this thread but it appears my random scarring has relapsed. I'm not sure why but it started last week and I've since observed the same pattern I noted years ago of a new tiny dent every day. So far I haven't seen any linear scarring but have observed random divots.
I hope my bumping this thread can lead to some more people coming forward with insight or sharing their experiences. |
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Sun Jul 07, 2019 12:50 pm |
Are there any updates from anyone? I continue to have this issue. I had a 1" or 1.2"long linear scar form vertically near the right side of my nose. A dermatologist confirmed to me it is not a wrinkle or smile line, but some "fold in the skin" as she calls it.
My latest news is I am awaiting to go back to a rheumatologist to follow up on a positive ANA finding from many years ago. At the time, the doc's suggestion was "maybe" I had some sort of mixed connective tissue disease, but I never followed up due to a busy work schedule. |
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havana8
Moderator
 
Joined: 09 Sep 2005
Posts: 3449
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Mon Jul 08, 2019 2:06 pm |
Yep, I mentioned this early on in the thread. I have suspected this disease, but medical professionals are not helpful at all. They cannot formally diagnose, and even if they did (I show them these studies printed out), there is no cure or help. It’s insanely hopeless. |
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