could it be lupus

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New Member

Date Joined Oct 2007
Total Posts : 1
   Posted 10/19/2007 6:15 AM (GMT -6)   
hello im new here and want some advice please.i have been ill for 9 years and cant get a diagnose and was wondering if anybody recognises my we go
sometimes pain and swelling in my finger joints,jaw,hips,knees,ankles,where my toes join my feet underneath and elbows.
sometimes pain in my shoulder blades so i cant lean against them or touch them
tender areas on my shoulders
sometimes urine infections
regular droping things
pain in lower left stomach because of bowels
raynards symdrome
awful headaches daily
droopy right eyelid
vision field problems
numbness in right side of face
depression 6 years
forgetfullness real bad
at times difficulty understanding people and being understood
sometimes heart feels like it gets stuck while beating
sometimes chest pain in the middle worst with movement or breathing
morning stiffness
mouth ulcers
regular infected swollan glands under arms and in groin
hair falls out by the handfull
if i cut myself it takes a long time to heal
regular fall over things
these are what i can remember at the moment i think it them all.i have been to see a doctor in the hospital and he has taken blood from me to test for lupus but i dont have much faith in the doctors as i have been ill for so long without knowing whats wrong with me.i am 34 years old with young children and am finding it difficult to cope on a daily basis any advice most wellcome.thank you

Post Edited (ziptia) : 10/19/2007 5:33:17 AM (GMT-6)

Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 10/19/2007 8:00 AM (GMT -6)   

Welcome to the forum! So sorry you are having SO much trouble.

The hospital will help you get extreme symptoms under control . . . but its not a likely place for a diagnoses. You say you've been dealing with this for 9 years and you can't get a dx . . . how often do you see a doc and how many docs??? I know I experienced symptoms for years and years and I went to the family doctor and told him I had fatigue. I didn't know all the other stuff was significant . . . so three different doctors dx'd me with depression and missed the big picture. But when I armed myself with proper notes and symptoms and marched back in for another try (about 15 years after the first try) I started to get somewhere. By then, I had extreme sun sensitivity and malar rash to go along with my other symptoms.

In case you haven't tried it . . . there is an outline for a cheat sheet to take to the doctor with you in the last post of "Lupus Resources". There is a clickable link in my signature. LOTS of good information in that topic. The members here each gave their best tips to new members and we combined them in one post in that topic. There are also some other clickable links in my signature that you might find useful.

You've definitely got something going on that needs medical attention and it sounds, from your description, that it might be 2 or more overlapping diseases. You say you have anemia . . . is your doctor treating that?? and the swollen, infected glands??? urine infections???? Those are measurable problems . . . is he not treating each of them??? Has he seen the mouth ulcers??? I hope you are keeping a symptom diary. Just use a small calender and jot things down. If you've brought these issues to your doc and he hasn't treated you . . . find another doctor. If he hasn't seen the mouth ulcers, take pictures so you can show him.

We can't help you dx your problems, but you can systematically prepare for you doctor visits and help him to get to the bottom of things. I hope the others have some good ideas for you too.

Knowledge is power so you will be doing yourself a big favor to learn all you can about Lupus so you can either include it as a possibility or rule it out. You do have some of the criterea for a lupus dx. It takes four of 11 criterea . . . there is a link in my signature to see all 11.

Glad you found us . . . keep learning and ask any questions you might have.


In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

Regular Member

Date Joined Jul 2007
Total Posts : 261
   Posted 10/21/2007 9:41 PM (GMT -6)   
Hi, Ziptia and welcome to the forum. I'm sorry you're dealing with so many symptoms and unanswered questions. Rosie gave you good advice. You will need to have everything listed out for your doctor to be able to guide them in dx'ing you. Dx'ing lupus, if that is what you have, can take a long time. It can be very frustrating. Have you gotten past the PCP yet to see a Rheumy? Please keep us posted as you go through this process. Take care,
Always looking for the silver lining, Sharen

SLE '06, Sjogren's '06, Traumatic Head Injury '94
Prednisone 9mg and tapering, Caltrate 1200mg, Multi-vitamin, Prevacid 30 mg, Actonel 35mg, DocQLace 200mg, Flax Seed (milled) 2Tbsp

Veteran Member

Date Joined Feb 2003
Total Posts : 5514
   Posted 10/21/2007 10:04 PM (GMT -6)   
Hi Ziptia,
Another welcome for you.  You do have a lot of classic symptoms that could be lupus.  Although, lupus does mimick so many other diseases.
It took my doctors and specialists 10 years to diagnose me.  For some it takes that long, others, quicker because the symptoms and blood work are extremely obvious.
Just keep that diary of symptoms going and don't stop seeing doctors and getting referrals.  It takes a long time to get all the symptoms to the point of being bad enough that the diagnosis comes.  Unfortunately, that is how it has to go with lupus sometimes.
Don't give up.  I know it's hard.  We all know how hard it is to live with such pain, illness and frustration.  We're here for you.
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, neutropenia, thrombocytopenia. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus

Veteran Member

Date Joined Dec 2005
Total Posts : 1950
   Posted 10/21/2007 10:16 PM (GMT -6)   
Hi Ziptia--
I'm so sorry you are having such a bad time with your health. It definitely sounds like the kinds of things that happen to me, but I have more than one autoimmune disease. If you can get to a doctor, you should ask them to check your thyroid antibodies for hashimotos, because much of what you describe sounds like possible hashimotos hypothyroidism, which runs with lupus, alot of us here have it, it is autoimmune thyroid disease. They need to test your TPOs (thyroid peroxidase, even if you have normal thyroid function tests (TSH T3). Many people are euthyroid (normal thyroid function tests) and have severe autoimmune thyroid damage and sickness. A family doctor can do this, but you need to tell them to test the anti-thyroid antibodies (TPOs) specifically usually. If they are high, you need to be treated regardless of what your thyroid function tests say. It can cause severe neurological damage. I also have a drooping right eye and some vision oddities. A schirmer test, which checks for the moisture in your eyes and is a test for sjogrens syndrome (another AI disease that runs with lupus very frequently and has the same treatment), would be an easy thing for any doctor to test, just make sure you aren't crying and your eyes are the normal dryness. Severe dry eyes and inflammation of the lacrimal glands can cause some real visual oddities as can hashimotos, which can even cause hallucinations, moving around black spots, periphera vision problems, even brain damage. These tests can help support a lupus diagnosis. Then hopefully you will get into a rheumie to get the regular blood tests. Remember that regular old osteoarthritis and degenerative disk disease or hot and swollen joints can get you a referral to a rheumie, so even if initial blood work doesn't seem to warrant a visit to the rheumie, you may have other problems that can get you in to see one. See sometimes the bloodwork doesn't come out positive, it can be negative then turn positive then turn negative again, and many regular doctors don't understand this. I knew I had AI disease, but I had to use my osteoarthritis to get in to see a rheumatologist and it changed my life, and my health and everything. I' so glad I didn't give up.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments

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