Newbie here, not dx'd yet...please help with recent lab results

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OBXgirl
New Member


Date Joined Feb 2010
Total Posts : 7
   Posted 2/4/2010 11:39 AM (GMT -7)   
I've been lurking here and gaining info for a few months. I want to tell you my heart goes out to each and everyone of you currently fighting this disease. I didn't want to post until I knew if I "belonged" here, but I just have so many questions.
 
I'm 43. Have been experiencing the following symptoms for the last 2 1/2 years, but they've increased in duration and intensity over the last 3 months. I don't know if any of them are related, but after reading through similar stories, I just want the right diagnosis so I can receive the right treatment and get my life back. sad
 
Symptoms:
-extreme fatigue (to the point that when I blow dry my hair, I have to stop 5 or 6 times to let my upper arms rest). They feel so weak. Doesn't matter how much sleep I get, I'm so bone-tired.
-hair falling out in clumps
-knee pain (both knees but moreso in my right knee
-i had to have a LSH Hysterectomy in Nov, 2008 because my uterus stopped working (excessive bleeding, clots, pain).
-recently developed a red-rash across both cheeks and nose, with a little redness in the middle of my forehead, too. I think this may be the "butterfly" rash that goes with LUPUS, but it's not as red as online pics I see.
-chronic diarreah for 2 1/2 years (finally diagnosed as IBS)
-had terrible case of shingles in August, 2009
-positively diagnosed with Raynaud's syndrome 2 weeks ago (thank Goodness the doctor was able to see the white, blue, red himself).
-I seem to be having difficulty finding the right words sometimes. I get close, like "example" instead of "x-ray" and am in a fog alot.
-my bp has been normally very low (80/60). Has been steadily rising. Yesterday's reading was 130/89 (despite being on a beta-blocker for heart palpitations).
-I was diagnosed with hypothyroidism 2 years ago, currently on synthroid.
-4 corneal ulcers with iritis since October, 2009
-no appetite, weight loss of 18#s in 3 months without trying (the one WELCOME symptom, rolleyes
-leg bruises
As of today, I have a strange new symptom to add: My scalp hurts in a particular spot on the left side of my crown. It actually burns and aches, whether I touch it or not, but worse when I do. And kind of a vibrating feeling in the back of my head.
-occassional headaches and neck pain.
 
I apologize for the length of the list, I just want to make sure I don't forget anything. I've only seen my PCP so far and he did a CBC, liver and kidney function test, ANA, TSH, sed rate and Lyme's disease. ANA negative, Lyme's disease says negative, although I did have positive bands in the test (whatever that means). Sed rate - 23. Only thing on my CBC that was out of normal ranges were low BUN (5mg - reference 7-20 mg); low BUN/creatinine Ratio (6.3 reference 12-20) and low Bilirubin total (.16 mg, reference .2-1.3 mg). TSH was 3.12.
 
PCP says my test results rule out LUPUS and other auto-immune diseases. He thinks I'm depressed (which I am, but that does not explain all this) Had I not been hanging around here for a few months, I would have believed him and walked away thinking I was nuts. Instead, I asked for a referral to a rheumotogist and endocrinologist. I don't know anything about either one of them.
 
What should I expect from my appt with rheumy? Will he/she do anymore tests? Are there any tests I should specifically ask for? I'm so in the dark here, even though I know more about AI diseases that I ever did before. I just want someone to hear me.
 
I want to feel better and be a wife and mother again. Sadly, I feel like I'm in for a long ride.
Thanks so much for listening. I welcome ALL experiences and suggestions.
 

Post Edited (OBXgirl) : 4/16/2010 10:44:37 AM (GMT-6)


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 2/4/2010 5:36 PM (GMT -7)   
Hi and welcome to the forum. I'm really sorry you are dealing with so many issues. Getting referrals to see the specialists is a great start...good for you for advocating for yourself! Make sure you take a list of all of your symtoms/concerns. Take a picture of any rashes, spots, redness, swelling to show the docs. Make sure you tell them all meds, including vitamins/supplements you are taking. I am really hoping you get some answers soon and get on the road to recovery!!

I would advise you not to get locked in on a diagnosis. More often than not, it's long in coming. More importantly, get your symptoms treated and under control so you function at an optimal level! Good luck and keep us posted!!! God Bless you, Judy

okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 2/8/2010 10:10 PM (GMT -7)   
OBX girl, hi hun! welcome to the group. Well it sounds like something is going on. I don't beleive in coincidences so I would say you belong here. We all have questioned ourself about that one. Then there is alway someone saying it's all in your head! and you want to wack them one! When do you see your doctor/rheumy? Also I would not take anything a regular doctor says about lupus or any auto immune disease as gospel. heck half of the rheumies don't even know. Plus you could have the best rhumy on the planet and it could take years to come up with a diagnosis. Also part of lupus is depression. it's not psycosymatic it is a legitimate part of your illness. Lupus can effect your adrenil gland which effects your depression. so for them to say it's depression is kind of like DAH??????. If you don't like the rhumy you keep searching you could see several before you can find one thatyou can feel comfortable with.
You have every right in the world to get the right treatment and have a quality of life that you deserve. I won't say you will ever been 100% but if you can get on the meds that at least help it is a start anyway.
please don't be shy ask questions and we will help with what we can.
again
welcome to the group
hugs
carol

systemic sclerosis,scleroderma,sleep apnea, anemia, COPD
 

 But those who wait on the LORD will find new strength. They will fly high on wings like eagles. They will run and not grow weary. They will walk and not faint.
 


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 2/9/2010 7:43 PM (GMT -7)   
Welcome to the forum. Make sure the rheumy you see is a lupus expert and not just a clueless rheumy (which many are). I wouldn't listen to anyone who said blood work ruled out lupus because blood work is not the end all be all and there are a lot of other tests that could have been run. I would also look for a lyme specialist to explain your lyme test results just to be safe. I spent years being told I was depressed and it was all in my head when I was sitting there with VISABLE symptoms like hands so red and swollen they looked like claws and the butterfly rash. I wish I coulod help you more but know I am here and listening. You have found a wonderful group of people here and many know what it is like to not have any dx or even a doctor who listens.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sj√∂gren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence


OBXgirl
New Member


Date Joined Feb 2010
Total Posts : 7
   Posted 2/12/2010 8:09 AM (GMT -7)   
Thank you all for your kind replies. :-) I have no idea what I'm fighting, I just know that I feel awful. Knowing that I have friends here who understand what I'm going through helps so much! I'm not finding a whole lot of support from the "outside" world. Seriously, co-workers have not had a problem telling me it's in my head, or it's because of my nutrition. I'm not anxious for a diagnosis. But I know without a diagnosis, I may not find the right treatment. Thank your from the bottom of my heart for your understand,  experience and  insight.

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 2/12/2010 9:41 AM (GMT -7)   
Welcome to the form OBXgirl. Prior to my diagnosis many people thought I was simply depressed. I remember feeling very alone in the world till I found the folks here, whom I identified with and who understood and supported me. I'm glad you're here, and I hope the forum helps you.

Pat
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

plaquenil, neurontin, synthroid, triamterene, actonel, niaspan, lyrica, tri-est, cymbalta,


OBXgirl
New Member


Date Joined Feb 2010
Total Posts : 7
   Posted 4/16/2010 7:28 AM (GMT -7)   

Thank you all for your kind replies.

Since I last posted, I've had appointments with both the Rheumy (who I really like) and the Endo (which I don't like at all). I have a few answers, but not a clear diagnosis that covers all the bases. If you don't mind, would you take a look at my labs that I have so far and let me know what you think?

Repeat ANA - negative

Thyroglobulin Antibodies - 24.1: range, <20: flagged H

Thyroid Peroxidase AB - >1000: range 0-35: flagged H

Beta 2 Glycoprotein IGG - 9.7: range <20

Beta 2 Glycoprotein IGA - 57.5: range <20: flagged H

Beta 2 Glycoprotein IGM - <9.4: range, <20

Brain MRI - normal

Rheumatoid Factor - <7: range, <14

Sed Rate - 20: range, 0-20

CBC - normal

I'm still awaiting results from SSA-SSB antibody, Lupus anticoagulant profile, Complement C3 and C4. My medical record shows dx of "Raynauld's Syndrome, Sicca Syndrome (Sjogren's Disease) and Hashimoto's Thyroidis. And of course, Depression. Duh! I'm tired of hurting and being tired. Of course I'm depressed. rolleyes  have a return appointment with my Rheumy on May 6 to review the results. My endo has ordered more blood tests for next Tuesday: cortisol, free T4, TSH and Vitamin D levels.

My symptoms are the same -- extreme fatigue, hair falling out, always cold, fuzzy brain, weight loss. My knee pain has resolved, thanks to the Rheumy's injection of cortisone. I just feel so crappy.

I would appreciate any help in what these tests may indicate. Have they ruled out Lupus? I just want to feel better!!!!

Thanks for looking.

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