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Another Frustrated Newbie
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Another Frustrated Newbie

Hi All... I'm hoping for some support and guidance. I hope you'll bare with me... I'll try to be thorough while attempting to keep it as short as possible.

I'm 39. Dad had Lupus (SLE). Paternal Grandmother had Lupus (Discoid). Paternal Great-Grandmother had SLE (we think). Maternal Grandmother had Sjorgens and possibly Sclerederma.

I've had many symptoms going on for a couple of years (!)...

Heart Palpitations (MVP confirmed)
Worsening PMS and Menstrual Cycles (though Menses itself has lightened).
Joint Pain. Hips are the biggest problem (and get especially bad around Menstruation). Also ankle pain and wrist pain. Wrist and elbow stiffness. There doesn't appear to be swelling or redness in any joint.
Joint pain is worse at night and in morning... Though lately, long periods of walking aggravate my hips, ankles and feet A LOT... to the point where I feel like I can't continue walking.
Leg numbness/tingling. Worse at night when laying in bed, but can happen sitting in chairs too (legs crossed or not). Left leg is particularly bad... area of thigh right above knee feels like it goes completely numb. Moving around and changing positions often "brings it back".
Occasional migraines.
Fatigue, especially in the morning (no matter how much sleep I get). Sleep is not refreshing, nothing wakes me up and according to loved ones I sleep like I'm in a coma (very deeply). I don't dream often, but when I do they are vivid and wacky.
Occassional kidney (?) pain - pain in the area. Doesn't feel muscular. Sort of pulsating. A recent experience with pain from this area radiating through to my stomach sent me to the ER. They found nothing.

Trip to ER was about 4 weeks ago. Since then symptoms have gotten worse and really have started to keep me from work (though luckily I can work from home, so I'm still able to actually work, just not go to office).

Primary doctor has run lots of bloodwork -- all normal. Lyme's test was negative. ANA was normal... and a slew of others. White cells were slightly elevated right after ER, but are normal now.
Abdominal Catscan was normal.
Upper abdominal and Pelvic Ultrasounds were normal.
Nerve conductive study was normal.
Gynecologist said all appears to be normal but for 2 small cysts on right ovary (not new). Only waiting for PAP results.
Urine shows some protein. This has been the result a few times now, however, morning first-pee urine shows none.

Primary doctor prescribed Prozac. I told him I wouldn't take it or even consider taking it until physical ailments were ruled out. I do not think I'm depressed (other than getting frustrated by lack of help). I'm not keen to take Prozac to treat PMS either (which he suggested it could help with).

I am HIGHLY allergic to Ibuprofin and Codeine, so typically I avoid pain meds when possible. Tylenol is the only safe bet. I have mild allergies (or am "sensitive") to some antibiotics, so I'm always afraid to try anything new.

I have a Rheumatologist appointment schedule in a few weeks.

I've been dealing with some of these symptoms for years... such as the hip pain, worsening PMS, palpitations and migraines... though it's only recently that they are becoming debilitating. The fatigue has gotten pretty bad and is interfering with my ability to get my butt to the office a few times a week like I should. I'm getting very frustrated.

I'm wondering what I should be concerned about at this point... and if there are any specific questions I should ask the rheumatologist when I go in a few weeks. The Rheumatology group I'm going to is the same one my father and maternal grandmother went to, so I feel it's a good bet when they'll have access to my family history.

Any insight or assitance?... any would be appreciated...

Thanks if you've read my long post!
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6 Comments Post a Comment
881165 tn?1265988188
Just remember that if the Sjogren's antibodies come back normal, you should still have a lip biopsy done to rule out Sjogren's, especially with a family history.  
387767 tn?1345875627
Just to let you know, I have similar symptoms.  I was diagnosed with fibromyalgia, but I don't believe it.   I do have problems with my back and neck--bad discs, etc. and arthritis in my knees.  My hips hurt too, and shoulders.

It's very frustrating.  I thought I might have RA, but the doctors keep saying no.  My sister has RA.  I am being tested for Sjogren's this week.
483733 tn?1326802046
I was diagnosed (or at least rheumy feels pretty strongly as my blood work and symptoms continue to reveal info) a couple of months ago with Lupus SLE and RA.  I have suffered from a couple of other auto-immune diseases in the past.  The symptoms for these diseases really revealed themselves last spring when I was diagnosed with ovarian cysts.  I'm not sure if one impacted the other but it was a strange time.  I am hypothyroid and my hormones and thyroid levels went very wonky with the cysts.  PMS and menstrual issues as well as bloating, lower back pain and nausea often occur with ovarian cysts.  

I was quite surprised to hear that your doctor is not treating you for your cysts.  I am the CL for the Ovarian Cyst forum here on MedHelp and based on my own and others' experiences if a cyst has not resolved itself within a few months it should be removed.  Do you know what kind of cysts and what size?  I would encourage you to deal with them so that you can determine what symptoms are due to other areas and not the cysts.  Good luck.
881165 tn?1265988188
Good point TrudieC!  Not to mention, when the cysts rupture, they hurt so bad you want to die!  Treatment is good :)
Avatar f tn
Thanks everyone... I'll keep you all posted.
Avatar n tn
Your symptoms seem to fall into the cfs or fibro category. If you are having no swelling that is a good sign. I would see a rhumy and maybe request him to check for the spots hit most by fibro. I also have MVP and get the palpitations often but it is pretty mild. I have all the symptoms of RA and Lupus right now but also undiagnosed at this point.
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