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01/15/2010 09:36 PM

Finally, ive found someone like me...

FreshStart1234
FreshStart1234Posts: 19
Member

Hello. My names Kyla. And this has been a long time coming. Since i was a child all i can remember was feeling sick and exhausted all the time. Before age two i developed Henoch purpura (bleeding into teh skin) but after that, the docs couldn't fidn any reason for my complaints. I threw up all the time, ran to the washroom and had extreme mood swings from being over tired and sufferent from cold sores regularly.

What they didn't know was that i had atopic dermatitis and the rash was very faint looking and light becasue it was chronic (every woman in my family has a different autoimmune disease). I grew up this way and knew i was somehow differnt then everyone else, but family just thought i was a "behaviour problem" and just plain anxious.

At age 17 i had a baby in which i gave up for adoption knpwing i couldn't raise a child the way i felt what seemed to be small "issues" with my health, became deadly. I started to get diagnosed all the time with hypotension,sinus infections, viral infections, bacterial infections (mostly staph and strep) my chest hurt and my eyes burned along with mild eyelid inflammation. I unfortunatly had to work so i would talk myself into walk ins instead of family docotor. They only treated my infections and told me that i just hadn't built up an immunity yet to my work (i was a waitress). When i did see my family doctor she ran ANA and thyroid tests to test me for lupus etc etc and hypothyroidism but everyuthing always cames out negative..all she could find was that i was anemic. I started to think i was crazy and kept more and more to myself.

I became depressed and then made the most biggest mistkae of my life...i started popping pills and drinking(mostly over the counter) which i now know more then likely contributed to the next stage of undiagnosed atopic dermatitis. I developed a generalized rash that lasted months. At this point i knew it was immune, but was angry no one could find it. Depressed i never told anyone even though i knew i was dying (i was vomiting, delusional, losing weight, heart palpations, shortness of breath, severe pain in back and legs and purpura appeared again on my legs and my skin all over my body seemed to hurt). Soon after the rash developed I became pregnant the second time on purpose hoping the pregnancy would kill me (was to chickenshit to do it myself but knew that most autoimmune disease worsen if pregnant). It didn't, but i misscarried and it made me suffer even worse then before. Hours before the misscarriage I had an "event" that can only be described as a spiritual one. THis changed my mind about suicide and i have nev er attempted again.

I changed my life (quit drugs, drinking, jobs) and spent hte next yaer afterwards lookng after myself. My sympotms didn't completely go away, but they becasme livable so i still didn't tell anyone and decided that i only would if "it" ever came back. Well, three and a half year ago (im 28 yrs old now) I took biaxin for a lung infection. I had alwasy noticed that when i was "sick" or took antibiotics i had a rash all over my face and chest (not a single piece of normal skin)that seemed to have bumps or pimples.

But having extremely fair skin, I just felt that if i felt sick it would be normal for me to have a flushed look to myself and so i had always ignored it. It wouldn't let me ignore it any longer. I noticed over a few weeks following that infection, that my old "symptoms" were back. THe same ones i had just before the misscarriage. I looked at my ankles and they were swollen. I went into teh doc and she ran every test for every autoimmune disase u have ever heard of...and it all came back negative making me look like ht crazy one again. I pushed on, and she sent me to an internist (who thougnt i had mild rosacea until i landed in the hpsotial then she cahnged her mind to it being an infection). But during this time ai needed IV several times and lost 20 pounds in under two weeks and was vomiting constantly. Shingles broke out, i had an episode where i jsut stared at a wall for 18 hours and at one point i was sleeping the day away 20 hours at a time. I noticed my skin was "peeling" my hair was falling out and my nails were shedding. I got heart palpatation attacks and they found irregular heart beat (it was beating to slow) I demanded to see a rheumatologist. Byt the time i got to one, the r ash had disappeared for the most part...but i had a secret weapon. I had taken pictures of all the cold sores, the general rash, and teh ankle swelling. She recognized the bumps all over my skin as papules and "erythematous nodules" and had all the hosptial visits and records from what my family doctor had found (i had secondary vascultisi as well). They tested me for HIV and Hepatitits since we still did not know i had atopic dermatitis and the general rash had covered any sign of it up but the rheumy did tell me she thought she knew what i had and that i needed a dermatologist. 18 months after it all started...signs of more acute rashes started to pop up and i took myslef in to the doc and they diagnosed me with atopic dermatitis that had basically every complication u can imagine (funal, viral, bacterial etc etc). The root to all my problems since childhood. Im on topical steriods, anti histamiles, creams, see my eye doc regularly. I now have a great support team at my doctors office for teh first time in my life. I finally feel listen to.

I could go on and on about what this had doen to me as a person negativly. however it has done alot to help me positvely as well. It has forced me to take control of my life. If i hadn't pushed, they would have never found it since it was chronic and my rash looked very faint. I own my own home, work with disabled adults and I am also happy to annouce that i have a brand new baby boy!! Despite me still getting sick during my pregnancy he is healthy as can be (born at 8 pounds and 11 ounces). He is shpwing signs of eczema (my daughter who is in open adoption and who i still see regularly also has eczema) u can bet your ass im having it looked after.

sorry this was a long intro. But i have never met nor talked to anyone who can even come close to having the same problem

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01/16/2010 01:44 PM
mayadeb
mayadeb  
Posts: 192
Member

Welcome to our little group, Kyla. There aren't many of us here, but we are sympathetic. You might want to sign on to the eczema group, too. I can't say I have had the severe challenges that you have had. I can say, however, that when one's health is not good, it affects all parts of your life.

You didn't mention your diet and that's something important to look into. Since you are suffering auto-immune symptoms, you might have food allergies that you're not aware of. That's what I found out about myself. I consulted with a naturopath for a while and found out that there are many natural substances that can help support and strengthen your immune system.

Please feel free to pose any questions in case we can help.

Again, welcome.

Maya


01/16/2010 04:00 PM
FreshStart1234
FreshStart1234Posts: 19
Member

lol i have looked into diet. Just didn't want to get into everything or we would be here all day lol. During testing i came upon something interesting. I had a reaction (dyspnea and facial flushing) upon recieving contrast dye when they were looking into my blood vessels (they were looking to see if there was a blockage in my heart at the beggining of the flare up when they didn't know what it was). When u first go into the CT room, you have to sign a sheet saying your not allergic to shellfish cause if you are u may haev a reaction. Never noticing any reaction right after eating it before..i signed the waiver. Did i get a suprise half a second after they shot the dye into my vein. They made me stay at teh hosptial for a bit to make sure i good before i went home (its a sesitivity not a true allergic reaction to the dye...true allergic reaction causese a coma instantly). So...i must say im a bit suspicious of shellfish now LOL LOL

01/20/2010 12:57 PM
violett
violett  
Posts: 3376
Group Leader
I'm an Advocate

Kyla, I 'm so glad you have found this group. It's lonely and scary facing this disease, thinking you are the only one... It was 8 years before I was diagnosed, then another 7 years before I found this site. When I did, no one else was on the forum. I'm so glad we have grown to 8 members. As Maya said, it is a small group, but a good one, where everyone cares and helps one another.

You have been through a lot of illness, and I'm not sure it is all related to Erythroderma. You may have other health problems in addition. I hope you have a good doctor who will get to the bottom of everything.

Many times Atopic Dermatitis is the underlying cause of Erythroderma (also known as Exfoliative Dermatitis." It is important to find what substances trigger the Atopic Dermatitis, so you can avoid each of them. Have you done allergy testing?

Welcome to our group.

Best Wishes, Violett


01/20/2010 01:07 PM
violett
violett  
Posts: 3376
Group Leader
I'm an Advocate

Kyla, I understand how scary it is not know what is wrong and to feel you are the only one, even after diagnosis.

I'm not sure that all your symptoms are related to Erythroderma. I hope you have a good doctor who can sort it all out for you.

I recently posted a review of a very helpful book about Inflammatory foods. It helped me to find which foods I need to avoid. You can find it at http://www.mdjunction.com/erythroderma/articles/anti- inflammatory-diet--recipe-book

best wishes, Violett


01/20/2010 06:12 PM
violett
violett  
Posts: 3376
Group Leader
I'm an Advocate

I don't know what happened to my message. I tried to submit, then it wasn't there. So I wrote another one, and now they are both there. Just overlook that I made the same statements in two different posts. Smile

01/22/2010 03:41 PM
FreshStart1234
FreshStart1234Posts: 19
Member

thank yoru for yoru concern Violett. And yes, there seems to be more to me then just the erythroderma. I have had a positive test for my thyroid being hypo during a breathing attack as i call it. My hormone went from two point something which is normal to five point something. Since that test they have not found another abnormal one (this happend after atopic dermatitis diagnosis).

I also was diagnosed at age 20 with mild mild prenatal brain damage from teh amount of drugs my mother had to be on (she was in multiple organ failure with her autoimmune disease when pregnant with me, kidneys, liver, etc etc) Bakc then Immuran was a new drug and was not recommended during pregnancy at all. She had to be given huge amounts of it as well as prednisone. I was diagnosed with the brain damage by a geneticist who looked at my case and found small physical features of brain damage. I was in regular classes etc math in school but struggled with learning etc etc So when i become overly stressed or sick etc i have had neuroligical signs as well (iave had two grand mal seizures in my life no explanation). Same with medications. Ive had several CNS vertigo incidents from meds (keep in mind i was a drug adddict at teh time and was taking many non prescribed things as well. Sober i have had no more vertigo incidents).

With me, whos to say if some of the symptoms are part of a birth defect. Premature babies which i was are also more prone to infections etc etc even as they age so its hard to determine whats what half hte time complicating my case even more.


01/22/2010 04:59 PM
violett
violett  
Posts: 3376
Group Leader
I'm an Advocate

You have a lot to deal with. Do you have a good doctor who is trying to help you with all these issues?

01/23/2010 11:38 AM
FreshStart1234
FreshStart1234Posts: 19
Member

Yes i have a excellent family doc. They are known to be some of the best in Calgary and are highly respected by other doctors (it started out as a small practice with all women doc).

Our previous doctor out of the same office (who is now deceased, she was killed in a plane crash with her husband around christmas few years back in colorado i beleive, they hit a mountain?) She was fabulous (her name was doctor Sheila Malm. she had rheumatory arthritis as well.

So she understood autoimmune disease well and was trying to teach doctors (she did conferences) on how to act morally and to take time with patients. By the end she was only at the office the odd time due to her own illness. She fortunatly passed on her teachings to all the staff at our clinic so thier excellent. We were told once by another doctor "those are a powerful group of women in that clinic!!"

My doc now tells me that she cant diagnose me as hypo thyroid "yet". So i guess she is waiting to see if another test comes back positive and ive been instructed to get my butt to an emerge should another breathing attack happen.

So i guess and wait and see. Her believe though is that it could be possibly the pituitary and if it "maxed" out (i have no idea what she meant by this but she could be thinking of this due to the brain damage.

She hopes the vertigo was just drug related.


01/23/2010 12:02 PM
violett
violett  
Posts: 3376
Group Leader
I'm an Advocate

I'm glad you have her as your doctor and that she is so kinowlegable. I think you will do OK by being patient and letting her sort it all out, then following her instructions.

best wishes!

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