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Discussion Starter · #1 ·
Hello, everyone. My name is Sheree, and I'm a stay-at-home-mom. When I was 16, I had strep throat that went untreated and progressed to scarletina (scarlet fever). Since then, it seems as if my body has been attacking itself daily, and in many different areas of my body. Just to let ya know, I've been to 3 rheumatologists, all who were jerks who cared nothing about me or my condition, just how many times they could keep me coming back for more vague "diagnoses" of fibromyalgia or CFS. I've had blood tests come back positive for the following:
Anti-Sm antibody
Urinalysis has shown proteinuria and/or hematuria at various times throughout the last 2 years, with several bouts of kidney stones usually accompanying them.
From head to toe, here's what's been going on:
hair loss, headaches, blurred vision, hypoglycemia, excessive thirst, dry mouth and eyes (dentist i went to yesterday that my mouth looks like a clear-cut picture of sjogren's syndrome, because the teeth are decaying from the gumline inward, instead of just usual wear and tear that begins at the tip of the tooth), a weird black spot on my iris (the ophthalmologist called it something that started with an "n", but it's basically a non-malignant tumor), severe myopia with astigmatism, repeated ear infections since birth resulting in two sets of tubes in each ear by the time i was 5 years old ; Intermittent bouts of thrush (most recent was WITHOUT the use of any antibiotics to precede it, so it's a classic indicator of immune system problems), enlarged parotid glands and cervical lymph nodes for the past year and a half with no known origin, a breastbone that pokes out significantly (such as seen with Ehlers-danlos syndrome), torticollis of the neck from repeated car accidents (I was a horrible driver when I was younger) that not even the strongest muscle relaxers can manage (have tried every single one out there, including flexeril, skelaxin, soma, etc. to no avail), a problem with the area that connects the head to the spine (MRI report said, "an increase in the angle between the clivus and the dens"), intermittent hepatomegaly and splenomegaly, gastric ulcers, IBS since I was 14, repeated bladder infections since I can remember, repeated UTI's (involving the kidneys) since I was 17, joint pain and stiffness in the fingers mostly, but sometimes in my knees and ankles. Swan-neck deformity in the fingers since childhood, and raynaud's phenomenon for the last 3 winters that have made cold weather absolute **** for my hands.

Now, having put all of you through all that stuff, let me just say that I'm not a whiner by nature. In fact, I make youtube videos about OTHER people's pain so I don't spend so much time focusing on my own.
But it's gotten to the point where my relationship with my almost-5yo son is being threatened, because i am utterly exhausted most of the time, and I can no longer pick him up like I used to. Also, being in pain has dampened me and my husband's sex life, because I feel like I'm 56 instead of 26.
Not only that, but I have the distinct feeling that I've let all this go for far too long without demanding a more definitive diagnosis from one of the rheumatologists. I get sick so often, the my extended family got to the point where they accused me of faking being sick to get attention or to get out of my parenting duties, which is absolutely not true.
Has anyone else found a route to a diagnosis that worked for them?
Does anyone else have any of these problems, too? I'd like to feel like I'm not alone in this.
Thanks to anyone who listened.

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2,872 Posts
Welcome to the forum Sheree
You sure have a lot of health issues on your plate and a very unfortunate health history
I hope you can access an expert rheumatologist who specialises in connective tissue diseases such as lupus and its variants. Many of us have to make an all out effort to see such a specialist whatever it takes to get an initial diagnosis and all important validation.
Symptoms do not have to be present all the time for diagnosis, just once is enough. An ANA of 1:320 could well be high enough and the anti Sm is regarded as specific for lupus.

Fibromyalgia is a very real diagnosis based on an examination of pressure points and clinical history. It quite often accompanies lupus and can cause numerous lupus like symptoms and be quite as debilitating. CFS is a diagnosis of exclusion.

Contact your local LFA Chapter and have a look at the ACR list of specialists in your area and you can ask here too.

Please let us know how you get on and don't hesitate to ask for further help.

Bye for now

· Registered
2,444 Posts
Are you on any treatment at this time? Did your prior rheumy's completely dismiss your positive test results? If so, it's definitely time to get a doctor recommendation (look through our Find a Doctor section) or just post and ask for recommendations near you.

With a lifelong history of repeated and serious infections I have to wonder if you have had your immunoglobulins tested? I have low IgA for example, which increases the odds of developing lupus. We've had other members here in the past with multiple low levels of different types of immunoglobulins, which really bumps up the odds of getting infections.

Definitely time to get a diagnosis, and some treatment. Treatment can make a big difference, hopefully enough to get you back to enjoying life and your little boy in all his activities ;)
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