New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

OhWell
New Member


Date Joined Feb 2008
Total Posts : 11
   Posted 2/20/2008 3:11 AM (GMT -7)   
Hello Everyone tongue ,
I was browsing information on Lupus and came across this forum. I have some questions and after reading some of the posts I feel a few of you may be able to help me. So thank you in advance to all who respond.

I am a 30 year old female with problems. lol! For the past few years i've been pretty ill. Body pain, lots of fatigue and of course the depression that goes along with it. The end of last year I had some normal blood work done and my sed rate, platelet count, WBC and alkaline phosphatase were all elevated. I had a follow up test done in January and all were still elevated. Sed was 28, not extremely high, but still high. Platelets were 555,000, white blood cell 14.2 and alkaline phosphatase 111. Around the same time the nurse noticed my heart rate was high, 124. The Doc followed with a 24 hour holter monitor and it showed sinus tachycardia (high heart rate) with my highest rate 159 at rest. I'm now seeing a cardiologist who is in the process of running tests. In the mean time my doctor wanted to test me for lupus and did so by ordering a lupus antibody test, i will know the results Friday. He has already tested me for RA with a ANA? test and it came back negative. Now from what i'm reading the ANA screen is also the test used in diagnosing Lupus, so i'm a bit confused. This last blood test I had did seem different because a lot more blood was drawn and one vial was actually placed in a cup of ice after it was drawn. So is this actually a different test and are any of you aware of the actual name of it, because the only thing written on my orders for blood work was lupus antibody.

What I would like to know is do any of these test results or symptoms trigger a possible diagnosis from anyone? I don't really see a connnection with lupus but I noticed many of you have a lot of other diseases and conditions listed. I'm really confused with what's going on with my body and i'm not sure my doctor is on the right track.

Some other problems i've had in a past few years in case anyone can relate with them...
I've got major skin issues, I have several sores throughout my body which never seem to completely heal, lots of them constantly drain puss and/or blood. (Sorry to be so descriptive) I do not have diabetes.
I aslo break out with rashes a lot, usually on my hands, breasts, abdomen and across my nose and cheeks (it doesn't appear to be the butterfly rash)
I get severe pain my legs which feels like it's coming from deep in the bone.
I've been diagnosed with degenerative joint disease in my left hip.
I have tons of back pain, which may be do to my weight and the fact that i carry it mostly in my stomach.
Over the past year or so i've been waking in the middle of the night due to my arms falling asleep, all the way from the top of my shoulder to my finger tips and it seems to be getting harder to "wake them".
I have a lot of stretch marks that started out in my teens at a normal weight which I always found strange because I never went through a rapid weight gain and most of the women in my family don't have them and didn't even get many through pregnancy.
I've been skipping periods for four weeks at a time sometimes and when I have them they seem to be very clotted. I've never had kids and since the age of ten my period came just about every 28 days up until this past year.
All around my chest, abdomen, under my arms and the upper portion of my arms are all very painful to the touch. I can barely take the doctor holding the stethoscope to me.
I am so tired all the time. I feel like i'm dragging my body around.
I also had many bouts of acute pancreatitis from ages 10-25 without a known cause. Possibly even an earlier age without diagnosis because of ER visits with severe stomach pain as a shild.

Sorry to have written so much but I wanted to write anything I could think of that may cause someone to make a connection or give me a lead with something. And i'm sure most of you know how it is to visit the doctor and barely have time to say one thing to them before they're rushing out of them room. Or not saying anything because you don't want them to look at you like you're crazy and paranoid. lol!

Thank you for giving me a forum to speak, any advice will be greatly appreciated.

~OhWell

kncb95
Regular Member


Date Joined Jun 2007
Total Posts : 40
   Posted 2/20/2008 6:06 AM (GMT -7)   
Has your doctor ever considered polycystic ovarian syndrome. PCOS causes missed periods, weight gain in the stomach area, and the sores you are describing. It will also cause people to be insulin resistant which can lead to diabetes if not treated. If your doctor brings this up to you they will test for insulin resistance. Now this test is not as easy as just drawing a fasting insulin. There is a formula that they have to do to average your fasting insulin and another fasting test(that I can not remember which one) and that will tell them if you have insulin resistance. For PCOS they will have to do a pelvic sono. If you have PCOS your ovaries will be covered in little tiny cyst. They will look like they are wearing pearls. The doctor will also have to examine your body for other physical signs of the disease. I know all this because I have PCOS and was insulin resistant. After being treated with Metaformin (a diabetes drug) I felt a lot better. I lost weight, had more energy, stopped having the sores. Of course when autoimmune disease kicked in all that energy just disapeared. PCOS won't explain everything but it is a place to look as well. I think you will need to see your gyno for this diagnosis or endocrin doc.
about the ANA there are people here who have been diagnosed with Lupus and other Lupus type disease without positive ANA. I had positive ANA at one time but it is negative now. Good Luck with trying to get answers don't get discouraged these disease are very confusing for doctors and patients and can take years to diagnose.
-Kasey
Dx: Mixed connective tissue disease '05, sjogren's '05, GERD '05, insulin resistance '01, ADD '01, major depression '98, polycystic ovarian syndrome '97 Hypoglycemia '07 hypothyroid '07

adderall, prozac, synthyroid, multivitamin


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 2/20/2008 6:25 AM (GMT -7)   
We here on the lupus forum highly recommend writing down all your symptoms and questions - then give a copy to the dr and keep one in your hand. Also take pictures of any rashes or sores -- often they change or heal before we see a dr!

Keep the symptoms short and sweet -- more of a reminder of things you want to discuss than a full report to the dr. More details can be found by reading the thread "lupus Resources" at the top of the page.

Also, look at the links at the bottom of my signature -- there are 11 symptoms used in diagnosing lupus - you need to have 4 of them before being diagnosed. A regular PCP or internist is NOT the expert for diagnosing lupus -- that would be a rheumatologist - and not just any rheumy, but one who is lupus oriented. Usually they can be found thru your local chapter of the (if you are in US) Lupus Organization. (link also below)

Cheers,

Lynnwood, Co-Moderator: Lupus Forum

Dx Lupus since '00, new Dr wants to Dx Fibro instead....
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions



KAnne1989
New Member


Date Joined Nov 2007
Total Posts : 16
   Posted 3/11/2008 2:36 PM (GMT -7)   
Wanted to reply to my post about the ESR you commented on.

That is a load of crock! FMS has NO tests that show its existence. None. Zip. Niente. The pressure point/tender point test and medical records are the best way to tell. There are no blood tests. Your doc needs to be doing some research. ^_^ You may have FMS, but the WBC and SED rate being high is due to something else entirely.
"Whatever life brings,I've been through everything
And now I'm on my knees
Hoping
But I know I must go on
Although I hurt I must be strong
Because inside I know that many feel this way...."
- "Don't Stop Dancing" Creed
 


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 3/11/2008 6:14 PM (GMT -7)   
Hello Ohwell:

Just wanted to add my welcome to our forum. Sounds like a lot of what I went through trying to get DX'd with lupus. Lynnwood gave you some advice and I'm sorry to say but it can take some time to figure out if it's lupus or not. Lupus is the disease of 1,000 faces. I've had lupus for 19 years but the first 13 years I was left untreated. Please hang in there we all understand the frustration and pain you're in. Looking forward to getting to know better.

Take care,
Barbara
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.


OhWell
New Member


Date Joined Feb 2008
Total Posts : 11
   Posted 3/12/2008 11:52 AM (GMT -7)   
Thank you all for the replys. I just wanted to let you know I have an appointment with a hematologist next tuesday for the platelet levels and a rheumatologist next friday for the rest. The rheumatologist specialises in internal medicine, is that a good thing? Or do they all specialize in that. Thanks for the support and i'll be sure to let you know what they say.

hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 3/13/2008 6:38 AM (GMT -7)   
I'm glad you are getting all of this looked into. I'll be interested to see what you find out.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums


New Topic Post Reply Printable Version
Forum Information
Currently it is Wednesday, December 07, 2016 1:49 AM (GMT -7)
There are a total of 2,733,979 posts in 301,164 threads.
View Active Threads


Who's Online
This forum has 151298 registered members. Please welcome our newest member, FrankByMonster.
202 Guest(s), 3 Registered Member(s) are currently online.  Details
THE HAPPY TURTLE, Stanislav, Stetsonva


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer