new member introduction

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twinx57
New Member


Date Joined Sep 2013
Total Posts : 3
   Posted 9/2/2013 8:42 PM (GMT -6)   
Hi all,
I am new to the forum,so thought I'd introduce myself.
I have been struggling with lupus symptoms which have steadily increased and got worse over the last 20 years or more.I have had various tests over the years,but despite presenting with butterfly rash,various flares allergic reactions and family members with lupus,my bloods keep coming back normal,so I do not have an official diagnoses of lupus.I have fibromyalgia,chronic fatigue,OA,asthma,allergies,wheat intolerance,IBS,.
It is great to have found you guys,and I hope I soon get the hang of how things work with a little help.
Thanks everyone
Twinx

Teddtlove
Veteran Member


Date Joined Jan 2013
Total Posts : 1038
   Posted 9/3/2013 6:06 AM (GMT -6)   
Nice to "meet" you. Sorry you have to be here but glad you found us. =)
30 female. Sherrie, 2007 UC, 5/13UCTD, Hypothyroidism, Intercostal Neuralgia, Agoraphobia, Bipolar tendencies, Panic disorder, Acid reflux, Lactose intolerance, Eczema, Migraines, Degenerative disk, Hypertension, and Anemia.
Plaquenil, Lialda, Canasa, Hyoscyamine sulfa, digestive ad lactose defense, Cymbalta, Lyrica, Lomotil , klor-con20, VSL 3DS, Rainbow light, Vit D, started Humira 12/31

twinx57
New Member


Date Joined Sep 2013
Total Posts : 3
   Posted 9/3/2013 6:50 AM (GMT -6)   
Hi Sherrie,thanx for the welcome.I too have bipolar tendencies and anxiety and depression so know where your'e coming from.Mostly try to stay upbeat but sometimes life is just a bummer!!!
Its my birthday today,so hoping to celebrate.

Wrongturn
New Member


Date Joined Sep 2013
Total Posts : 2
   Posted 9/8/2013 3:58 PM (GMT -6)   
Hi there, I am new to this forum also. 2 1/2 years ago I started by a strep infection that finally cleared up after 3 courses of antibiotics. Going through cycles of bacterial infection, yeast infections and bladder infection as well at this time. When I asked my doctor why I kept having these recurrent infections, he told me I had "bad luck"!!! (left in tears) A few days later, I fell down my parents steps and while checking for bumps on the back of my head, I found a large bald spot.My doctor told me I had a yeast infection on my scalp and gave me oral lamisil. Shortly after this I in bed for almost 3 days with my ankles, wrists swollen and my whole body hurting before I went to the ER. They tested my scalp for yeast and it was negative. The doctor there told me I was having an immune response and suggested I get blood work done and see a rheumatologist! I had a positive ANA and RNP. They diagnosed me with Lupus and put me on plaquenil(which I am still on), I did not tolerate it well and was in 10x more pain than before, a deep all over pain that my doctor said was fibromyalgia. I was given prednisone for 4 wks 25mg tapering and amitryptaline at night. Since then I haven't gotten as many infections but I still have regular pain, inflammatory arthritis, muscle aches, fatigue, depression, painful bladder syndrome( recurrent UTI symptoms, which I take pyridum for), Lyme disease, IBS, ulcerative colitis and proctitis, lactose intolerance, nightshade food allergy, and some signs of sjorgen's syndrome(try eyes and mouth), hormonal imbalance with menstrual migraine headaches and what else? Oh the kitchen sink haha! I saw a lupus specialist in Baltimore that rediagnosed me to have UCTD, undifferentiated connective tissue disease overlapping of multiple autoimmune conditions. Been trying to find balance and insite so I have joined you all!

Daniellatutu
New Member


Date Joined Sep 2013
Total Posts : 10
   Posted 9/9/2013 2:28 PM (GMT -6)   
wow I don't want to be disrespectful but, what kind of drs do you guys have in the US..wow this is very poor treatment and care that I am reading on some of these posts.

If you don't trust your dr, change ASAP.

How can someone have so many diseases at once...I don't understand. Did your dr tell you all this? Maybe you have ceiliac?

ouch..I feel for you, sincerely good luck and I hope they find a treatment for your ailments.

mikelshepherd
New Member


Date Joined Sep 2013
Total Posts : 2
   Posted 9/13/2013 10:57 AM (GMT -6)   
Daniellatutu,
I wonder what kind of doctors we have as well.
I am 57, and since 2002 my immune system has been showing me just who is controlling my life.
All of a sudden no more french fries, pistacchios, and a long list of other foods I have eaten all my life.
Airborne allergies? all of them!

And then during my allergy re-testing in Dec 2012, the head doctor tells me, "oh, by the way you have Lupus."

I sat there like a smart-dummy, nodding agreeably like I knew what he was talking about and figuring that any moment he would tell me about it and give me some brochures, at the least.

He didn't!

He told me to come back in 3 weeks and at that time the RA doctor on his staff would set up a treatment plan.

I showed up, and the RA doctor asked, "and what are we seeing you for today?"

Scream? No, but I felt like bouncing my head off his cabinet just in case my ears were clogged.

I told him patiently, since I was a patient, and he looked on the computer and shook his head and said he wanted to do another blood test in 6 months.

They are already treating me for Reactive arthritis and osteo-arthritis, and they know the list of physical complaints I have; so I said see you in July. What else could I do?

I saw them in July, took the blood test and they haven't called which they said they would if the results were positive.

I thought they would be positive, for instance today I have had so many heat flashes that I am convinced there must be a solar storm aimed at me.

Unusually, I also have needed to go pee about every five minutes for about 2 seconds, my face feels like it's being torched, my feet feel like they've been hammered, and although it's morning I think I could use a nap.

Maybe it's me, maybe my immune system is playing, 'let's screw with his head today' when there is nothing wrong, or maybe there is something wrong and my doctors are useless to me.

More questions than answers, but skin problems, infections, pain, fatigue, half of a butterfly rash only, heat flashes, urination problems once in awhile have me convinced that it could be lupus, since I can't quite pin the problems I have to anything else.

I hope the allergy doctor will at least have something to say to me in three weeks, because it's 6 weeks before I see the RA again, and I am confused, uncertain, and feeling a little lonely on a planet with 6 billion residents.
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