Michele?
#312110 - 07/27/07 11:54 AM
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I'm still wondering how the U of Mich appointment went...
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Christine
Those who can do; those who want it done better teach.
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[Research tells us fourteen out of any ten individuals likes chocolate. - Sandra Boynton]
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Re: Update
#312372 - 08/01/07 10:17 AM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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Sorry it took me so long, been really busy at work and not feeling well.
The U of M was a joke. Long story short, the rheumatologist said he really didn't know what was wrong with me other than I am over weight. He did draw 22 vials of blood, all of which were for tests I have already had, he did take x-rays of my hands and feet but nothing else. Told me not to bother making a return visit and he would call my pain doctor if he found anything. 
I left in tears, feeling more discouraged than ever. The guy spent like less than 10 minutes with me, didn't even check tender points for the fibro or to check how many swollen joints I have. My blood pressure was STILL high, it was down from the week before but was still at 158 over 110, he didn't even comment on that. He did listen to my chest but got angry when I told him I could not take a deeper breath because the inflammation in my chest we so tight.
I tried asking questions but he just keep saying he didn't know and that I need to lose weight. He did not refer me to the fibro clinic they have there or the pain clinic. Nothing. Nadda. Zip.
Its been a week now and I have not heard anything. I will give it 2 weeks and call as I want written copies of all my tests results. I have no idea what I am going to do at this point. I am still going to my pain clinic twice a week and have an appt with my old rheumy in a week or two but she has already said there isn't anything else she can do.
There is a person on my RA support board that lives relatively close and has a rheumy she likes, so I will probably call her doc after I get my results and see what they say.
Otherwise, I have just been utterly and totally exhausted. We had Wills bil's wedding two weekends ago and we had made arrangements to go out of town with another couple last weekend. I hurt and I am swollen and I am depressed. My house is a disaster but I just can not muster the energy or strength to clean it. Will is having some issues with some sort of back tax thing so money is a HUGE issue at the moment or I would hire someone to clean my house. Did I mention its my birthday and not even my mom has called.
Will is working all weekend so I will try to get done what I can and plan on resting as much as possible.
Sorry I haven't been around much, will try to get caught up today on some posts but my hands are really swollen so my replies will probably be short!
Love and hugs to everyone.
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Taking it one day at a time.....
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Hope you get some answers soon. How discourging it must be. Happy birthday! 
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Susan
IBS-A, Gas, Pain, Reflux
"The first in time and the first in importance of the influences upon the mind is that of nature. Every day, the sun; and after sunset, night and her stars. Ever the winds blow; ever the grass grows."
Emerson, August 31, 1837
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Re: Update
#312386 - 08/01/07 12:32 PM
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Toady
Reged: 04/06/06
Posts: 1299
Loc: A small city, Northwestern Ontario, Canada
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I still haven't got that magic wand!! Darn it!!
But Happy Birthday Sweetie!!!
I hope the upcoming year brings you more answers!!
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Cassandra
Live like there's no tomorrow. Love like you've never loved before.
IBS A 20+ years, Chronic Migraines, Chiari Malformation (decompressed June 22, 2010), Brachial Neuritis, and ??? the list just keeps growing, but I'm still shiny side up!
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Oh, that is so NOT the news that I was hoping for! What an a$$! It's not like you're morbidly obsese and putting all that strain on your body! I'm so, so sorry, Michele. I can only imagine how disappointed you feel.
I know things are hard, but please do keep your chin up and keep looking for answers. They're out there! Maybe that other girl's rheumy is a good place to start.
Have a happy, happy birthday! I'm sure your mom will call and the day will improve! (((((Hugs)))))
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Christine
Those who can do; those who want it done better teach.
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Re: Update
#312404 - 08/01/07 02:56 PM
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tc2004
Reged: 05/26/04
Posts: 118
Loc: Texas
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Michelle,
I wanted to say Happy Happy Birthday to you.
Terry
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Re: Update
#312412 - 08/01/07 05:05 PM
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Sand
Reged: 12/13/04
Posts: 4490
Loc: West Orange, NJ (IBS-D)
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Oh, Michele, I'm so sorry to hear the U of M guy was such a dead loss. I'll keep my fingers crossed that once he sees your test results he'll either be more helpful or refer you to someone who will be. And, if not, maybe your friend's rheumy would be a good person to try.
I'll also keep my fingers crossed that Will gets his IRS problems straightened out - ugh! Don't stress over the house - take care of yourself first.
And try to have as happy a birthday as possible under the circumstances. Take care.
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[Research tells us fourteen out of any ten individuals likes chocolate. - Sandra Boynton]
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Re: Update
#312426 - 08/01/07 08:40 PM
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daliatree
Reged: 07/10/04
Posts: 1176
Loc: Manhattan, New York
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Hi Michele
Its been a long long time since I wrote on these boards, but reading your post compelled me to ask if you've ever tried a super strength anti inflammatory diet (heavy in omega 3 fatty acids, restricted for omega 6 fatty acids, heavy in ginger/tumeric/garlic, low in animal proteins etc etc)...I don't mean to ask a stupid question and I'm sorry if you tried this ages ago, but I care and want to just throw it out there....
I'm sorry you're suffering so much :-(
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Feel the fear and do it anyway!
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Re: Update
#312437 - 08/02/07 04:21 AM
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Mary_V
Reged: 05/09/06
Posts: 544
Loc: Grandville, MI
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So sorry to hear this Michele. I would have thought U of M would have some great doctors. I guess not. I hope your tests show something that they know how to treat. Try to stay strong and take care of yourself. I know this is not a fun struggle, but it's worth it...you're worth it! I hope you ended up having a great birthday. And I hope Will can get his financial stuff figured out.
Have you heard anything about getting disability yet?
Stay strong. You're in my prayers.
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~Mary
Had surgery for rectal prolapse in Sept. '06 and feeling good now! Loving life with our IVF miracle #1.
 
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Re: Update
#312454 - 08/02/07 08:06 AM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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Thanks everyone. Will did meet with an IRS guy and got that figured out but it will take 10 days to get our money back!
My mom did call and so did my friend here. I was really tired though so I just had some dinner and went to bed early. My bosses wife though did bring me in a little try of treats, they are Jewish so I have no idea what any of it was but boy, it was tasty!!
At the moment, just waiting to get the tests back. I won't give up the search but I do need a break for a bit.
I have tried the anti inflammatory diet but probably didn't give it long enough. I really need more protein than it allows. There are several people on my ra support board though that do follow it and they say it helps a bit.
I stopped the acupuncture, had about 15 weekly treatments and it just didn't seem to be doing much anymore and at $70 a pop, well just couldn't afford it. However, they have figured out how to bill massage under physical therapy so I am still getting my massages and I look forward to them. Have not pursed the disability yet, I need something concrete in my blood work to show them.
Right now, trying to muster the energy to vacuum the office. 
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Taking it one day at a time.....
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Oh wow! I wasn't expecting that news. I really wish you would have had better luck. I also wish the rheumy that I saw there would have still been there but the last time I saw her she said she was leaving to work more on research . She was a great lady around our age and just really was thorough and I didn't have any of the symptoms that you have. Her name is Dr. Kristen Johnson and you might call to see if she is still around. Maybe she changed her mind. I hope you at least got to enjoy your birthday a bit. Did you do anything fun? I won't be online at all next week as we are leaving for vacation. I will talk with you soon!
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I'm so sorry you're having such a hard time, Michele!! I'm sending good thoughts and HUGS your way. Happy Birthday, too!!!
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~~~~~~~~~~~~~~~~~~~~~~~~
Lisa, IBS-C (Vegan)
Stable since July 2007!
Mommy to Rhiannon Marie (Dec. 13, 2008)
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Re: Update
#313039 - 08/11/07 07:25 PM
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jen1013
Reged: 05/06/05
Posts: 1322
Loc: the wabe
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Ugh!! I'm so sorry you had such a crappy day.  Just wanted to say one thing, though ... I've also had lots of health problems over the last couple years, and I have made two trips to the Mayo Clinic and three trips to the local hot-shot university hospital/clinics. None of them helped me in the slightest and just served to make me feel even more bitter/depressed/angry/etc. I think it's because you expect more out of a place like that, and yet when you go there they aren't interested in you because you're not doing anything cool like bleeding out your eyeballs. So try not to feel too badly that they didn't help.
I imagine you've seen just about every -ologist there is but have you done a really thorough evaluation with an endocrinologist yet? I hate to even bring this up because my mom does it all the time and it drives me up the wall, but apparently there are thyroid problems that don't show up with the usual thyroid tests. My mom was sick for years with autoimmune-like symptoms (including severe swelling in hands/feet/joints, fatigue, weakness, pain) and went several rounds with all sorts of doctors before she finally started taking thyroid medication and felt a million times better. But, she has to take T3, since T4 (like Synthroid, which is typically prescribed) just makes her feel worse. It's worth a shot, anyhow. I seem to recall that you did possibly already have a go-around with an endocronologist but I can't remember for sure.
Anyway, frankly it always drives me crazy when people ask me "So have you tried ... ?" but I am unable to stop myself from doing it to other people. Apologies.
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jen
"It's one of the most serious things that can possibly happen to one in a battle -- to get one's head cut off." -- LC
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Re: Update
#313192 - 08/14/07 09:32 AM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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Jen, you hit it exactly, about the big clinics!!!
I have seen just about every ologist there is but no, haven't hit the endocrionologist yet. I saw a reproductive endocrinologist with the fertility things a few years back but not a regular one. I have an appt in 2 weeks with my regular gp and I assume the endocrinologist will be my next appt.
I saw my regular rheumy last week and she said yes I do have seronegative ra, to continue my humira shots and the steroids. But, she thought my biggest complaint at the moment was due to the fibro. They started me on the lycria again, tried it before and couldn't take it but we started at a lower dose this time. It was just fda approved for the use of treating fibro.
My overall pain is down to about a 6 or so with specific joints hurting worse at the end of the day. It was a screaming 8 all the time. But, they have me doped on so many pain pills and crap that I am more than dazed and confused all the time!
The swelling in my neck has gone down but my hands and feet are just as bad. I am not on much anymore because its hard for me to type. Hopefully my gp can sort things out a little and point me in the right direction. My blood pressure and my pulse have been sky high lately. I get these attacks that are sort of like a panic attack without the panic. My rheumy was rather startled the other day when I was in her office but I assured it that it happens frequently. My bp gets up to 180 over 110 and my pulse gets over 120, I shake and sweat and get breathless and dizzy, than it goes away and comes back whenever it feels like it. Crazy stuff, I am just a medical mystery at the moment!
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Taking it one day at a time.....
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How are you holding up? Did you meet with your GP this week? Are you going to be seeing an endocrinologist after all?
Just checking!
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[Research tells us fourteen out of any ten individuals likes chocolate. - Sandra Boynton]
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Re: Update
#314483 - 09/03/07 05:49 AM
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Ulrika
Reged: 08/20/06
Posts: 581
Loc: Uppsala, Sweden
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Thinking of you sweetie.
Hugs!!!
/Ulrika
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--------------------
Cassandra
Live like there's no tomorrow. Love like you've never loved before.
IBS A 20+ years, Chronic Migraines, Chiari Malformation (decompressed June 22, 2010), Brachial Neuritis, and ??? the list just keeps growing, but I'm still shiny side up!
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Re:Update
#314641 - 09/06/07 08:47 AM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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Sorry I haven't been around much, my life is pretty crappy at the moment. I did see the internist, the one dr who I have always liked. Apparently the dork from U of M called her and she didn't even want to listen to a word I had to say. Very long story short, she basically told me the same thing, I am fat and depressed. Never mind that when I first got sick, I weighed 136 pounds!
She told me that none of the many drugs I was on were "life sustaining" her exact words and that I should stop them all and see a shrink! Needless to say I left there bawling an hour later. So, I stopped 90% of my meds. One was a blood pressure patch and three days later, I was so dizzy, I couldn't hear because the ringing in my ears was so loud. I stopped at the pharmacy and took my bp, it was 180/126. I looked like hell, all pale and sweating and they wanted to call an ambulance but I refused. The pharmacist said you are NEVER to just stop bp medication, she was furious when I told her my dr told me to.
After a couple of days of near stroke level readings, I put my catapress patch back on and my bp is back down to relative normal levels.
Mt pain is pretty bad because I am swollen up like a balloon from stopping the prednisone and the humira. I am not sleeping and have been on a crash diet, lost 4 pounds in 6 days. Overall, I look awful and feel worse.
I can not think straight, I am dizzy and light headed and can't even describe the extreme exhaustion.
I did call and set up an appt with an endocrinologist for Sept 20.
Sorry, not real cheerful but I can barely focus on the screen and I just want to curl up in bed and pull the covers over my head and stay there for a month or two.
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Taking it one day at a time.....
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I don't know what to say about your internist. Her attitude sounds horrible. Sometimes I think that when doctors can't help they just decide there's nothing really wrong with us. I suppose it makes them feel better but it sure doesn't do much for us.
I hope the endocrinologist can be of some help - and has a better attitude.
I'm sure you're sick of doctors but at one point you were talking about trying the Mayo Clinic. Is that still on the table?
Take care.
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[Research tells us fourteen out of any ten individuals likes chocolate. - Sandra Boynton]
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That sounds awful, Michele, I'm so sorry you're having such a hard time. That doctor sounds horrible!! You certainly don't need that on top of anything else. I'm sorry I don't have any words of wisdom, just wanted to let you know I'm thinking about you. Sending HUGS your way!!!!
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Lisa, IBS-C (Vegan)
Stable since July 2007!
Mommy to Rhiannon Marie (Dec. 13, 2008)
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Re: Update
#314678 - 09/06/07 04:09 PM
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kim123
Reged: 07/18/06
Posts: 543
Loc: Florida
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Michelle...I am so angry that those doctors have not been able to help you. They seem to be making things worse! I have been following your story now and then, and I'm wondering if you, or the doctors, ever considered that you may have a fungal condition. Fungus can cause many diseases and illnesses. Have you been to, or would you consider, a naturopath? In no way do I mean to cross the line here...doctors aren't helping at all, maybe you need a different approach. Take care. I am hoping for the best for you.
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Oh Michele!
#314687 - 09/06/07 05:51 PM
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Toady
Reged: 04/06/06
Posts: 1299
Loc: A small city, Northwestern Ontario, Canada
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My heart breaks every time I read a post from you, especially one like this!! I still can't believe there is nothing out there to help!!!
I really hope the endocrinologist has something more informative to tell you. I can't believe your interist!!
Keep an eye on your BP - I know from being really low BP normally that it isn't something to mess with. Today I was 96 / 62. We should hook-up to each other and our BPs might average out to 120 / 80!!
I wish, as always, for a magic wand to wave over you. Until that dream comes true, know I think of you often and worry when you don't post. But I understand how difficult that must be for you, and just pray for a miracle.
Take care of you sweetie - and don't lose too much weight too fast - that won't help you either!
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Cassandra
Live like there's no tomorrow. Love like you've never loved before.
IBS A 20+ years, Chronic Migraines, Chiari Malformation (decompressed June 22, 2010), Brachial Neuritis, and ??? the list just keeps growing, but I'm still shiny side up!
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Michele, I'm so sorry about the treatment you got. I keep hoping that someone will give you the time and attention you deserve to get to the bottom of this. Please keep your head up and keep hoping for a better day! {{{{{Hugs}}}}}
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Christine
Those who can do; those who want it done better teach.
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I only have a couple of minutes as the boss is in today but wanted to say thanks to everyone for your kind replies.
The fungal thing I have thought about but not sure what they use to test for that? I know that I have been exposed to black mold. I do, well did, have an over growth of yeast but treated that with 5 months of nystatin.
It was suggested to me to read the book called How Doctors Think and I just picked it up last night. I am hoping it will give me some insight on how best to handle my upcoming appt.
Right now, I am so exhuasted I can not even describe it but I am sure that is because what ever cortisol I had in my some from the steroids is gone and I know my adrenals are not functioning. But, at least my blood pressure is more stabilized.
I am just trying to get through each day at the moment and keep hoping that I will eventually find the right person to help me.
My appt is the 20th of this month, I will be sure to post an update but I am sure I will pop in from time to time as I miss everyone here.
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Taking it one day at a time.....
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So glad to hear from ya Michelle! Hang in there girl....I know you can do it. YOu've been through SOOOO much. I'm hoping that being off more meds might help ya too. Hey, you can only try...if it doesn't work then at least you can say to another doc "I TRIED THAT!!!".
I feel for ya, I really do. I hope the endocronologist has some answers for you.
Keeping my fingers crossed and HUGE HUGE hugs for ya!!
Keep in touch.
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~~~Lisa~~~
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Michele, You said you were exposed to black mold. How do you know? What were the circumstances? Did most of your symptoms manifest themselves after your exposure? Was that "very important factor!" ever brought up in your doctor visits. Mold, especially black mold, can wreak havoc on our health. After reading your story, hearing about your symptoms,and seeing all the drugs you've been on,I am still betting your condition is fungal related. It is documented that fungal toxins make tissues swell and cause pain, can trigger FM, sap your energy, cause high blood pressure/ high cholesterol, mimic symptoms of RA, to name a few. Sound like anyone you know? Michele, you're breaking my heart here. Don't discount fungi being the cause of your symptoms. Find a doctor who will listen, and at least investigate the possibility. Seek out a naturopath, if necessary. Even then, they all don't know a lot about fungus. Maybe it's not a fungal/mold problem, but, what if it is......
I'm praying you will find your answer.
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Thanks Kim. The black mold is in our office. We had it tested because the office next to us remodeled and they said they had it. The testing was like $500 but my boss wouldn't pay for clean up and he just put bleach on the spots. It is around the floor trim.
It wasn't too long after that that I started having issues. I have mentioned it to my doctors but they all shrug it off as no big deal. It is at the top of my list when I see the endocrionologist in a couple of weeks. Not sure if there is any specific test they can do on me or what sort of treatment would be available?
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Taking it one day at a time.....
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Geez Louise...if I was a betting girl........I really think the mold thing is something to investigate. OK, so you only had the mold along the floor trim (that 'is' enough to make one sick). And, the office next to you was the one who actually had the most. So, don't you share the same ventilation system? That stuff has been circulating throughout the building. Do you know of any others who have shown any signs of illness? Do you notice if you feel better when you are away from the office? I see the main symptoms of mold exposure is, but not limited to: upper respiratory problems, nose/eye irritations, skin problems, fatigue, headaches/migraines, nose bleeds, chest pain, fever. Have you had much of that? If you are really serious getting to the bottom of it all, I would even suggest going on an antifungal program. If you have a fungal condition, you will notice improvement after being on the program only a short time. Please keep in touch. I really hope you can find the source of your ill health. Let me know if I can help in any way. Thinking of you...
Kim
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Hugs, hon! I'm so sorry I haven't gotten back to you! I will try to e-mail you soon.
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Formerly HanSolo. IBS, OCD, Bipolar, PTSD times 3.
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