RA or Lupus?

[swatts831]

Since 1997 I have been dealing with a number of symptoms. None of the doctors that I have seen have been  able to give me a definitive answer as to what it may be that I have. I have received ever diagnosis from Fibromyalgia to Rheumatoid Arthritis to Lupus to Depression. It all started with pain in my fingers and has progressed into pain all over my body. Here is a list of my symptoms. Hopefully someone will be able to put the pieces of the puzzle together and give me a clue as to what it MAY be....

Migraines
Hair loss
Some hearing loss over the years
Left eye twitches
rash over cheeks and nose that comes and goes
face will appear burnt when i haven't even been out in the sun
dry eyes with flare ups
eyes are extremely sensitive to light
shoulder pain
hip pain (especially in the left hip)
constant low grade fever (99.5)
knees crunch when sitting and standing
knee pain when walking
Ankle pain
Akiles tendon pain sometimes
toe pain
Elbow pain
Wrists pain
Wrists pop and crunch
Finger pain in all fingers
Memory hasn't been what it used to be
Lose balance from time to time
Bruise very easily
Occasional hot and cold flashes
fatigue


I have been on Plaquenil for about 7 months with little to no help, and the only thing that seems to help is Predisone but I gained weight extremely quick on it so the doc took me off of it. I do have an appointment with a new Rheumatologist next month. All the blood work that I've had done recently came back normal except for my CRP and SED rate. Both came back almost double what they should have been.

[Dnmh]

One other possibilty is Sjogren's Syndrome. I bring that up because you mentioned the dry eyes. Here is a paragraph on the symptoms from the Sjogren's Syndrom Foundation...
"The hallmark symptoms are dry eyes and dry mouth. Sjögren's may also cause dryness of other organs, affecting the kidneys, GI tract, blood vessels, lung, liver, pancreas, and the central nervous system. Many patients experience debilitating fatigue and joint pain. Symptoms can plateau, worsen, or go into remission. While some people experience mild symptoms, others suffer debilitating symptoms that greatly impair their quality of life."

Sed rate elevation is very common in this disorder as well. (Sed rates are not positive or negative - they are either "normal" values or elevated) As for ANA - in the early stages of autoimmune disorders, they can be negative. That doesn't mean one doesn't have AI. Mine was negative for several years, until 2005 when it came back positive with a titer of 1.7, but I still have no patterns showing up. Patterns give an indication as to what type of AutoImmune is present.
Maybe mention Sjogren's to your doc. This disorder also falls under the specialty of rheumatologist.

Keep us posted!

[swatts831]

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[swatts831]

I have had ANA profiles and Lupus panels done... strangly enough, they are all coming back negitive. The only thing that does come back positive is the Sed rate and the CRP. They both came back double the normal rate. My PCP said that there is obviously something going on and it may just not be showing up in the bloodwork yet. But he thinks that I have symptoms of both Lupus and RA. He says lupus only because of the facial rash. But RA because the joint pain and where it's located.

[sdauwer]

Have they ever checked your ANA levels? Your symptoms do sound alot like Lupus that blood test isnt a definitive answer but if you have all those symptoms and a positive ANA then its more than likely you are positive for LupusDIagnoses can take awhile. I am postive ANA and I have a lesion on my brain and my lumbar spine. They believe I have CNS Lupus. I am waiting to see a specialist before I go on any meds. Good Luck Stacey

[roxstua]

If you can, please list those ingredients for me...I can look them up.

[swatts831]

I use the Clorox Green products that are all natural.

[roxstua]

In the meantime, try something...stop all contact with cleaning chemicals...use gloves, and avoid fumes...it works for me and it might help you too.

[Dnmh]

Good for you! Keep us posted!

[swatts831]

I FINALLY got the referral and the appointment! I have it set for Friday Feb. 13 at 3pm!!!!!

[Dnmh]

Call them everyday if you have to. Offer to drive over and pick up the referal form, etc. Remember the old adage - the squeaky wheel gets the grease!

Let me know how it goes!

[swatts831]

I am trying to get an appointment with a new Rheumatologist at the moment. I'm having problems with my PCP though. For some reason they wont sent the referral over!!!! And it's pissing me off! He's been after me since October of last year to see a Rheumy and now that I've found one that has an appointment soon, and not like Nov of this year; his office won't send the referral!!!!

[Dnmh]

Okay, I've looked over your symptom list a third time. These could be caused by so many different things, including Vitamin Deficiencies, Autoimmune disorders, Dehydration... You don't mention the thyroid antibodies test - TPOAb - is a common one.

I would suggest finding a new rheumatologist. If he/she can't help you, find another, and another, until you find one that can piece it all together. Take copies or have previous doctor send all test results. In fact, there is an excellent post at the top of this forum titled "Tips for Rhuemy Appointments".

Unfortunatley, the road to a diagnosis can be long and difficult. You need to be your own best advocate and keep pushing for an answer. I myself have had progressive symptoms for over 12 years. I started my "journey" with doctors back in 2000 - had a 4 year misdiagnosis and left it at that for a while. I finally found a new primary doctor this past September who knew he was out of his league with all my symptoms so he referred me to an endochrinologist (I have a nodule on my thyroid) and a neurologist. I'm still waiting results on ALL the tests the neuro ordered. It was actually my neuro that ordered the thyroid antibodies test (came back negative) to rule out autoimmune thyroiditis as the cause of my symptoms and nodule!

Both txsilver and myself have traveled the long journey. We aren't the first, and we won't be the last. Keep pushing, no matter how many docotr you have to go through.
Dnmh

[swatts831]

I've had the TSH and the Free T3 done. The TSH came back the first time low, then they rechecked it and it was in the normal range but on the low end of normal. The T3 was also on the low end of normal.

[Dnmh]

What tests did they run, do you know? To get a true reading of your levels, they need to test TSH, Free T3 & T4, and they should check for thyroid antibodies. Most only test TSH, and a lot of thyroid conditions don't cause a deviation in TSH.

[swatts831]

Yes I have had my thyroid tested several times. The first time it came back on the low side, then the past several times that I've had it tested it was in the neormal range but on the low end of normal....

[Dnmh]

Have you had your thyroid levels tested? A lot of your symptoms could point to a hormone imbalance. I have to run out and pick a kid up from work, so I'll post a little more later.