Positive AnA, then negative everything, plus confusing diagnosis

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Regular Member

Date Joined May 2012
Total Posts : 277
   Posted 5/24/2012 6:18 PM (GMT -6)   
This is my first post, so I will just say 'Hi' now. *waves*

I have no idea what is going on with me, and I am willing to accept the fact that it very well may not be Lupus. It is just that with everything (minus the blood work), it is what makes the most sense. Sine February, I have been feeling less than well. The list of symptoms is extensive, and it includes, but is not limited to: migraines (more and more severe than normal), three different types of rashes, hair loss on my head, arms, legs and pelvic region (in circles everywhere except my head - that is normally dispersed hair loss, plus my hair feels like straw - I take really good care if my hair, and even my hair dresser is shocked at how it looks and is), achy joints, including my neck and back, memory issues, possible seizures, swelling on my hands and feet (just mild swelling), ears ringing (normal hearing test) and head fullness, dizziness and lightheadedness, little pin prick red marks on my skin (they do not blanch or go away), retinal issues (not the nerve, but did cause the start of detachment - had surgery for it) and a lot more that I just can't think of off hand. Oh, I don't want to forget about the fatigue - the "I wish I could feel human again" fatigue.

My doctor has no idea what it is, so she has been sending me to specialist after specialist. They each do their own little thing, and some just dismiss me. My neurologist is concerned, only because I was really doing well with the migraines until Feb. Today, I had a follow up with the Rheumatologist, and he said that all my blood work, including the previously positive AnA (1:320 and homogeneous) was negative. I do not know exactly what he ran, but it was a lot. I think it may have been 14 tests, including two Lupus panels. I do know he tested for rheumatoid arthritis too. I asked him about the conflicting AnA and he told me that since it was originally positive, that it was positive still and that the original test (the positive one) was a more thorough test (my primary care dr ran the first one). That makes me question if the other tests he did were not "thorough."

This is what he told me today. Apparently I have something called Ehler-Danlos Syndrome. I will agree that some of the symptoms make sense for this, but not all of them. But one of the the huge symptoms for this is not related to EDS, I don't think. I had weight loss surgery 8 years ago, and since I lost weight so fast, I have loose skin everywhere. Rapid weight loss does not just make loose skin in the belly. You have loose skin in places you could not imagine that loose skin could be. He looked at the skin on my hands and other places and noted that it can be stretched. I have also been bruising easily lately. This is not something that has been this way my entire life - only since Feb. EDS is a lifelong syndrome - something you are born with. I would not all of a sudden be having these symptoms. The joint pain, headaches, and fatigue fit, but everything else does not. He said it is not Lupus. He then told me that the hair loss was not bad (I don't know what he means - I have lost half of the hair on my head, but since I have ungodly thick hair to begin with, it does not appear that way, but those who know me have noticed it) and something about not being bald. He said that it was probably due to the weight loss surgery and vitamin deficiencies. Yes, this surgery can cause hair loss, but this is not it. I know because I have had hair loss from this before, and dietary changes fix it (plus the hair loss pattern is not the same). It is not better, it is worse since I added more protein to my diet. And my bariatric doctor already checked all my levels, and with the exception of my D, which I am on major supplements for, they are normal. The Rheumatologist also told me that I can just have steroid injections for my hair loss, but I don't just want it to stop, I want to know *why* it is that it has been happening.

I am not trying to say that I have Lupus. But with everything that I have been experiencing, it is the thing that fits the most. I am willing to entertain other possibilities (and I have already entertained (and looked for) several with my doctor already. I just want to know what is going on with me. I am so frustrated.

Post Edited (SoSt9) : 5/24/2012 6:24:27 PM (GMT-6)

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 5/24/2012 7:28 PM (GMT -6)   
You sound like me. Except for a positive ANA all my bloodwork came back normal.

If your PCP is willing ask him to put you on plaquenil to see if there is any changes. If you have improvement then the Rheumy was wrong with the diagnosis.

Regular Member

Date Joined May 2012
Total Posts : 277
   Posted 5/26/2012 7:40 PM (GMT -6)   
Thank you. I have made an appointment with a second Rheumatologist. I spoke to my neurologist since she seems to be the one who listens to me (my PCP does as well, but she is pretty young and is afraid to do anything that a specialist could do instead) and she said that I definitely need a second opinion is for nothing less, to confirm the Ehlers-Danlos Syndrome diagnosis. She said that from what she has seen of me, it does not seem that is what I have. She also said that there should be genetic testing for that. Hopefully it can be sorted out one way or another. I did ask her about the Plaquenil, and she said that she is more comfortable with a Rheumy giving that one out since it is so powerful.

On a side note, she is prescribing me Flexeral for my neck since the Zanaflex is apparently giving me seizures (she was resistant to say they were form the Zanaflex because I guess the side effect of seizures is so rare).
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