Ana positve, ddimer positive - short of breath

[unevenkeel]

Hello

For the past couple of years I have had "episodes" of not feeling well.  - body pains, short of breath, weakness in muscles ...they would randomly come and go.

2 weeks ago, I was at work and my eye felt like someting got in it -  later sharp pain in the eye and sever body pain and weakness. Also got really bad headache. The scarry part I keep feeling very short of breath and tightness in my chest.  Very hard to breath.  They have checked my heart and said no stroke.

Normally I am a very active 38 year old woman. Now  I have no energy, off and on lightheaded and so weak.  I have been to the hospital twice.  High ddimer and positive ANA.  My whole left side keeps getting tight and cold then a numb feeling. Random shooting pains. left eye twiches and appears slightly closed.  Neck tight - from jaw to chest.  Weak left arm and leg as this goes on.  I feel shaky.

MRI shows nothing but arthritis.

Looking for advice...

[laborlawchick]

You must be frustrated and all you want is just to know what is wrong and what treatment you need.  I have been there and my heart goes out to you.  It does not seem much right now, but your detailed documentation of each incident, where you were, what you were doing, the legnth of time, etc... As well as noticing any other factor - what you were eating, if you were in the sun, etc...  When you go to your doctor appointments,not only will he or she appreciate it, but I believe he or she may be able to greatly reduce the legnth of time they need to reach a diagnosis.  If you do start a book of notes, I find it also helps to jot down various other data, like your weight and date, when and where you have tests done, skin rashes, patches and other changes in your skin.  Also, changes that you may not normally take notice of, like hair falling out, dry skin, etc.. You will also be able to look back at the notes and see if there are common denominaters or patterns.  For example, You get weak at times and they all occured when I was out in the sun, etc...

If your immune system is involved the treatments vary so much that you really need a firm diagnosis with a doctor that will work with you.  I got frustrated with my rheumy and saw a neurologist who really works with me.  Of all things, my dermatologist is the first person to nail the diagnosis and prescribed the first medication that cleared it up.

To me, it sounds like you are having some significant symptoms. Do not get discouraged if more than one doctor cannot help you, it is your body and your life.  
are you currently on any medications (including herbs)?  sometimes bizarre symptoms are side affects from medication.

You said your heart is ok.  did you see a cardiologist?  What tests did they do?
pain along the jaw is one symptom that women get for heart attacks, men rarely do there.  Also, the out of breath, do you have allergies normally?  Again, this is another symptom that could indicate anything from heart issues to MS.  

Please do not give up and just live with it, as some people say.  It can be difficult to find the right doctor, not necessarily only one specialty, my own family doctor caught the hypothroidism and nodule and prescribed the right medication and this was after an endocrinologist said I was fine and had Hoshimoto and get an annual blood test.  After gaining a total of 45 lbs. over the course of two months, my family doctor, bless his heart, took an interest.  I still have to follow up with a specialist, but my doctor would prescribe medication and tests so I only have to go to the Rheumy when I bottom out.

Anyway, take care and let us know how you progress. I never even heard about these forums. everyone is so supportive, encouraging and passes on new treatments and helpful tips.

Best,

laborchick
(Carly)  

[SickMomma_PDX]

Have they tested you for Anti-Cardiolipin Antibodies and Lupus AntiCoagulant? What kind of MRI was it? Did they check you for pulmonary embolism?

You might consider asking your doctor about AntiPhospholipid Antibody Syndrome. It can cause those kinds of symptoms and the positive D-Dimer & ANA ... But if your ACL and LA tests are normal, I guess I'm not sure what it would be.

Good luck -- those symptoms sound miserable to have to put up with!