undiagnosed connective tissue disease...................

2 yrs ago i developed a rash on thigh but it was under the skin deep reddish purple but only appears in cold weather so had a punch biopsy done which showed work up of collagen vasular disease.Since then seen my primary doc for physical ekg was abnormal with lining of heart thick meantime blood work was positive ana and titer of 1:160 speckled pattern found out i was hypothyroid taking synthroid for it and b12 and vitamin d difiency (deficiency) which i took 4 shots the b12 went through the roof at 2000. sent me to gaestrenterologist for endoscopy which showed i had giardia a parasite took antibiotics which has cleared up now. been seeing a rheumy for this undiagnosed connective tissue disease i've had brain mri which only showed mastoid air cell was inflammed and bone scan which showed nothing. my symptoms are as follows: extreme back pain when waking every morning to the point i have to wash my hair at night because of the pain to blowdry it.headaches, tingling and burning sensations all over body, left leg can only lift so far up because of the pain,muscle twitches , spasms in toes that draw up with pain,hearing loss in right ear, swollen lymph nodes in neck and base of skull ,chest pain,heartburns daily,fatigued all the time, weakness in hands makes it hard to write, sunlight sensitivity break out in rashes also note at 11 i had bacterial meningitis adn now years later i develop all the symptoms .could having bacterial meingitis caused the symptoms over time? still no diagnosis searching for my answer hopefully very soon i will get that...... over the course of 6 months bloodwork showed cbc/diff/pl neutrophils % at 91.4, uninalysis was wbc esterase abnormal,wbc was 6-10 abnormal,tested for rnp,smith,sjogrens and antiscleroderma-70 antibodies which all were negative, sedimentation rate has always been high around 24, had positive pernicious anemia test ,igm serum low at 43 mpv at 4.4..... any suggestions please help.

[karajo]

OK, there appears to be several diseases that are considered connective tissue diseases.  I am certainly not an expert on any of this, but maybe I can help you understand this on an elementary level.

Connective tissue diseases that are strictly due to genetic inheritance include Marfan syndrome (can have tissue abnormalities in the heart, aorta, lungs, eyes, and skeleton) and Ehlers-Danlos syndrome (many types may have loose, fragile skin or loose [hyperextensible] joints depending on type).

Other diseases of connective tissue that are not defined by gene abnormalities (or have a weaker genetic factor).  They are characterized as overactivity of the immune system which results in the production of extra antibodies.
These connective tissue diseases include:
systemic lupus erythematosus,
rheumatoid arthritis,
scleroderma,
polymyositis, and
dermatomyositis.

These are considered classic collagen vascular diseases. Each of these diseases has a "classic" presentation with typical findings that doctors can recognize during an examination. Each also has various typical blood test abnormalities and a variety of abnormal antibodies that are commonly found in blood testing. However, each of these diseases can evolve slowly or rapidly from very subtle abnormalities before demonstrating the classic features which help in the diagnosis. (in other words, it is probably going to take some time for things to come to the surface)  And sometimes the symptoms go away mysteriously and nothing comes of the dx process.

When I read your symptoms I thought about either polymyositis or SLE.  SLE can affect every system in your body.  

Please keep us posted on your findings.