What's wrong with me!!!

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New Member

Date Joined Sep 2011
Total Posts : 2
   Posted 9/21/2011 4:56 PM (GMT -6)   
Ah, where do I begin...

In 2008 during the month of July I had a miscarriage at 6 weeks after some spotting, I was slightly depressed afterwards but I handled it pretty well. I'm a pretty optimistic, happy-go-lucky person who tends to see the up side in everything and looked at my unfortunate event as a sign that I was meant to finish school and travel the world as I had always planned to before having children. Shortly after the miscarriage, I had my hair dyed and experienced some hives and a lump formed behind my right ear-which still remains. I don't know if any of this is related but I want to give you guys all the details. April of 2009, I had a minor flu or cold but recovered quickly. Later that month, I was sitting at home one night and started to experience weird leg pain, it moved into my arms and lasted several days in all of my limbs. It was shortly followed by my symptoms of Livedo Reticularis. I was sent to a Rheumatologist, after being told I was just depressed from the miscarriage and being called a hypochondriac several times by my boss who happens to be an Internal Medicine doctor. All of my labs from the Rheumatologist came back normal, minus my ANA, which always comes back at a low-positive, my doctor/boss says the titre is not high enough to even be considered positive, it fluctuates between 1:40 and 1:80 and has remained that way for 2 years now. He's made it very clear that he would hate to see me diagnosed with anything Autoimmune and that even if I am in the beginning stages...I should just live with it and see where it goes...because the alternative is Steroids and things will only get worse from there. I should also add that I'm a 28 year old female who was previously a smoker and is currently overweight and my position at work is pretty sedentary. Here's what I am looking at now- over 2 years from when the pain in my limbs started. My ANA and labs remain unaffected, I have livedo reticularis that comes and goes seems to be the most prevalent when smoking and in the restroom (I know, TMI). I also experience inner ear pain, ear pressure, ice prick head pains that come and go, I also have red flushing of the ears and sometimes cheeks. And feel that my hair has gotten thinner. When the levido reticularis flares up really bad is usually when I begin to get the head pains. The head pains sometimes come in the bathroom when I have the flare-up of livedo reticularis, sometimes they also happen when I am stressed or deeply confused. I experience occasional joint pain and abdominal pain, but I don't feel that it's excessive or completely out of the norm. I have an extremely high pain tolerance, so it's hard for me to measure my pain against others. I will say, I feel that I have the control to exacerbate my symptoms...I almost feel they are somehow correlated with my blood pressure rising or exertion or really I'm just guessing. It started in the legs but I now get it in my arms and on my stomach as well. I developed Asthma as a child after a severe reaction to fire ants but outgrew it in my teens and I had tubes in my ear as a baby. Other than that, I was always fairly healthy minus my weight struggles.

I didn't realize this would turn out so long, but this is my story....I'm a little at a loss...is it APS..is it Lupus...is it Sneddon's..or do I just need to get on a freakin treadmill and lower my BP and all of my problems will be solved? I'm curious as to what your thoughts are, if you're going to be offensive...please don't comment..

I should add that my BP when calmly sitting and lying down was/is almost always perfect but I think it rises dramatically when I'm active. I realized this after running two blocks to my Dentist, who then refused to work on me because my BP had shot up so high. It was also high the few times I went to the OBGYN while I was pregnant.

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 9/21/2011 5:08 PM (GMT -6)   
If I was you I'd go to a different Rheumy and get a second opinion.

New Member

Date Joined Sep 2011
Total Posts : 2
   Posted 9/21/2011 5:59 PM (GMT -6)   
Thanks Joy, I will take that advice. For now though...I am interested to hear other people's opinions or thoughts on what this could be....I've never shared my story with strangers. I thought this big Autoimmune family might share some insight...

Forum Moderator

Date Joined May 2005
Total Posts : 7675
   Posted 9/21/2011 7:14 PM (GMT -6)   
Is the dr/boss a rheumy? If so, yes, I'd get another opinion. If not, yes, I'd find a rheumy! Either way, I don't think a friend/boss makes the best dr, there is a conflict of interest, same as why dr's don't treat their own families.

One good way to make sure you find a dr who knows about auto-immune diseases and doesn't have a personal agenda is to check out www.lupus.org and find your local chapter. Then see which Drs volunteer their time to the chapter -- these are the fellows who know most about Lupus and the like and are interested in learning more!

Best wishes,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Regular Member

Date Joined Sep 2011
Total Posts : 26
   Posted 9/21/2011 10:28 PM (GMT -6)   

Have you been to a doctor and asked about fibromyalgia.? It sounds to me that you may be in the beginning stages of Lupus and the doctor may not be thinking clearly. The titer is always off especially when you have Lupus. So much for the comment the doctor made to you. I heard the same comment. Now I'm taking Predisone and several other meds. I personally believe if this had been properly diagnosed I wouldn't have so many painful occurences, it would have been controlled.

Regular Member

Date Joined Jan 2006
Total Posts : 395
   Posted 9/24/2011 6:53 AM (GMT -6)   
Hi! and welcome,
I vote with the others, you need to find a rheumy who specializes in pts with lupus, and I hope your dr. did antiphospholipid/anticardiolipin antibody titres. I am sorry you lost your baby, and my hi risk OB told me had my APS been picked up on after my first or 2nd miscarriage, with treatment for APS, I may have carried my last baby to term. He told me it could take up to 12 months for my antistrep, and antiphospholipid antibody levels to go away, and that was how I spaced my pregnancies. I was told that in the "old" days, an ANA titre was the gold standard for lupus diagnosis, but that now, it is only a minor piece of a difficult puzzle. When I asked my rheumy why drs. keep checking bloodwork that is normal or negative, he said we know antibodies come, and go and that it is prudent to keep looking for them. In fact, my low positive titre was dismissed as "that will probably always stay that way" and plaquenil was started 'prophylactically' before he ever wrote lupus on my lab reqs.

God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis, Degenerative Osteoarthritis, Asthma
Meds: Plaquenil, Neurontin, Thyroid, meloxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily. (20-40mg prn), Vit. B12 2400 mcgs, Vit D 1000U, Calcium, Flector patch prn, Ambien and Elavil every night. Advair, Albuterol and DuoNeb inhalers.
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