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Post by semicolon on Mar 7, 2012 7:12:39 GMT -5
I'm wondering if you need to keep a really detailed journal of your symptoms, maybe there are some patterns that you haven't noticed. Were you on oral BC the last time you had the flare up? I'm wondering if your body is so bent on things being one way that when you change the way your hormones work it freaks out.
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Post by rhodygirl on Mar 7, 2012 7:47:03 GMT -5
I agree, Karen, my body is on serious overload. I just wish I knew why! Semicolon, great idea about the journal. I have a great friend that I talk with daily and have emailed pics, etc of some of this crazy stuff. I bet I can do a decent job of piecing together a timeline of symptoms from those emails alone. I also remember the sulfa antibiotic reaction was in September because I started breaking out at a wedding we were at. So, if I try I can make some sense of the what and where...just not why. I had not been on any form of BC before Mirena for at least two years. So, I don't think it's that. I have only had Mirena 11 months and clearly this has been happening for longer than I had remembered.
The doctor in Boston is impossible to get into, she (not insurance) requires a big write up and letter from your dr already diagnosing you with that masto thing before she will even see you...so that's not happening. I found a local allergist/immunologist that got good reviews online and was listed in some top 100 doc list and he is going to see me today at 4pm. Hopefully we can get on the right path. Though, in my heart I think they will start me doing skin patch tests and I'm almost positive these are not true allergies, but rather a exaggerated response to everything for some other reason.
I am supposed to leave tomorrow to go to LA for the weekend and am nervous to go. My neck started swelling again yesterday and my head tingling. They had my discontinue all antihistimines and meds for my appt today...
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Post by JC on Mar 7, 2012 8:55:57 GMT -5
Hey sorry I haven't been around in a few days! It's funny you bring this up because I randomly break out for no damn reason into really severe hives. It only seems to happen to me when I'm at home so I know it's something in my house. Like Karen said, I did figure out that those stupid glade plug-in air fresheners was part of the problem. The hives got better but I still randomly break out for no reason. Sometimes all it takes is for me to brush up on something and I get instant hives. Like my spiral notebook for school, I'm allergic to the damn metal on the spiral! If my arm leans against it then I break out in hives. I wasn't always this allergic to everything either. In general, allergies develop over time after repeated exposure so it does make sense that the older we get, we start to become allergic to things we come in contact with frequently. I really think the source is an autoimmune problem too. Why else are our bodies so sensitive to EVERYTHING? Our immune systems are in overdrive!
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Post by rhodygirl on Mar 7, 2012 11:20:01 GMT -5
Funny because I noticed that the metal on one of my purses was making rubbing on my arm and leaving a red mark on it. Not hives, but just always turning red in that spot. I can see the notebook being an issue. Can't wear my Tiffany's silver necklace that my husband bought me a few years back either. I get little tiny red bumps -- like tiny -- all around where the chain is around my neck and under the little heart charm. It's really starting to piss me off. LOL
Oh...and the little metal rivets in jeans...if they directly touch my skin, that's been bothering me too.
Strangely enough, my wedding bands seem to be fine.
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Post by rhodygirl on Mar 7, 2012 19:45:00 GMT -5
Welp, Dr. was nice. Said it's going to take some times to get to the bottom of this. Did the standard allergy tests in his office -- only thing positive was dust mites. He said he wants to do a chemical patch test and expects more to show up on it. Though, I have to be off all meds for a few weeks prior -- and he just extended my prednisone. I got the green light to go forward with surgery, as he said there isn't really much they can do. People still need to have surgeries and procedures even with allergies -- I will just need to let them know of all my recent reactions, bring a list with me, tell them what meds I've been taking at my preop and go from there. He thinks it's unlikely I'll have an issue with anesthesia, but that in the rare event I did, they are prepared for it. He had a good attitude...like a "you still gotta live your life" type of way about him and not a the type that expects the worst. I kind of liked that. So....we shall see. I was happy to have confirmation that my cats and dog didn't have anything to do with my issues. I had already told the Dr. they weren't going anywhere - so we would have to fix that if it was a problem.
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Post by Karen on Mar 7, 2012 20:08:08 GMT -5
Hmm, well, it's a start, right? Here's hoping you get somewhere with it and your surgery doesn't cause any problems!
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Post by rhodygirl on Mar 7, 2012 20:25:58 GMT -5
It's a slow start. And, even if he finds that I am allergic or sensitive to certain chemicals, it still doesn't tell me "Why"? BUT -- I guess everything is a process. All of us endo girls are used to waiting forever to get answers, diagnoses and dare I say, RELIEF. So, why should this be any different? Sigh...
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Post by semicolon on Mar 7, 2012 21:02:04 GMT -5
Sorry Boston was a dead end, but I'm glad you found this doc. None of my specialists ended up being in Boston, go figure. How long will he let you stay on the prednisone? I know that is not a forever solution for most people, which is frustrating because it works so well. Have fun in LA (they have docs there just in case something funky happens)!
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Post by rhodygirl on Mar 7, 2012 21:18:17 GMT -5
Yeah, that's not the first time Boston has been a dead end for me. Found it to be the same with doctors for my son. I like my gyn surgeon though, he's pretty good -- and more conservative -- he actually reeled me back in this past summer and suggested I wait a little longer after my 2nd lap before removing my ovary. It wound up continue to cause problems, but in hindsight, it's nice to know he isn't ready to jump into surgery at every chance. Off topic, but did I mention he's using the robot for this one?
This doc didn't say how long on the prednisone, but said he wanted to continue for another 10 days to suppress the immune system otherwise he fears I will have another flare up -- and actually said he wanted to ensure i have a good time on my trip - which was nice. They do work great - and quickly, but I don't want to deal with the long term effects of extended use, so I hope we find another solution.
My friend has already assured me she has perfected the art of driving in LA traffic and is 10 minutes from the nearest hospital. HA.
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Post by batgirl on Mar 7, 2012 22:01:47 GMT -5
It's really interesting how often immune system stuff comes up here! I am allergic to sulfa drugs (always have been) and am allergic to deodorant, dairy, raspberries, benadryl (I KNOW OMG), artificial sweeteners, and I have auto immune hypothyroidism. Random question - have you had both types of allergy tests done? I came up with a false negative on the skin pricking test for dairy, but the allergy blood test found antibodies. I've also found that my allergies get worse during my period. In general I can wear deodorant sparingly, but can't touch it during my period. It's so weird. I asked my doctor and she said she'd never heard of anything like that, but that it sounded intriguing, heh. I hope your trip goes well and that the prednisone helps!
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Post by rhodygirl on Mar 8, 2012 7:19:04 GMT -5
Allergic to benedryl? What!!! Crap! Have you tried the dye free kind? You know I have a lot of the symptoms of hypothyroidism, but didn't want to walk in there and suggest anything. A lot though, hairloss, dry skin, weight gain - despite eating well, fatigue ...a lot of it. AND, my hair dye incident and the sulfa drugs at least both happened like the day before my period started. Even more weird is that with Mirena, its rare that I get a real period, mostly I spot a lot, but I just got one, and same with the sulfa drug reaction...I had emailed that to my friend. I believe there is a link there too! I have even commented to my husband that there seems to be about one week a month where things are really bad with my skin....red, inflamed, peely. I think that may be the link. Thanks for bringing that up!! How is hypothyroid treated? And when that is under control do the allergies get better?
Nope, no blood work to date. This was the preliminary appointment.
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Post by Karen on Mar 8, 2012 8:01:29 GMT -5
Hmm, the hypothyroid link and allergies is an interesting one to me. Essentially, hypothyroid is treated with medication to supplement the thyroid hormones your body isn't making. I'm hypothyroid and still trying to treat it properly because - get this - my body didn't agree with either synthroid or NatureThroid (similar to Armour). I'm on a non-standard drug now and starting to see improvements. In my readings about it, I've seen some personal experiences where people's food sensitivities disappear almost instantly when adrenals and/or thyroid are treated properly. I haven't experienced that yet but I hope to!
Rhodygirl - if you do get tested for thyroid, please be sure to ask for TSH, free T3, free T4, and antibodies.
And interesting link to your period! Have you considered tracking your reactions and period on something like reliefinsite.com to see if you can get a better handle on the cycle?
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Post by rhodygirl on Mar 9, 2012 10:06:02 GMT -5
The thyroid link is beginning to make a lot more sense and seem more likely. The allergy link and suspicion about vaccines egging things on is very interesting too. I HATE vaccines.
I will ask for those tests to be done when I go back. Thanks for the advice and info!
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Post by Karen on Mar 9, 2012 10:10:01 GMT -5
Who knows, maybe there's no connection, but it certainly doesn't hurt to get your thyroid investigated. It controls EVERYTHING in the body! Well, just about...
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Post by rhodygirl on Mar 9, 2012 23:07:37 GMT -5
I completely think there is a connection between vaccines and the immune system -- not endo necessarily, but I suppose it's all intertwined in a way. I even have experienced my cats getting sick afterwards, when they were find previously. I've never been a fan of them and was NOT happy I had to get them all over again for school. I got the whole lot all at once to get enrolled in school this past summer. I was apprehensive about doing it, but had to for enrollment.
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