I strongly suspect I have autoimmune issues of some kind and am currently jumping through hoops to try to get them diagnosed. By all reports, this is usually a long and complicated process that involves a lot of being told that nothing is wrong or no one knows until possibly someone eventually figures it out. Can I rush this process and finish it before my insurance lapses in six months?
I guess the main thing I would like is stories of ways that you got doctors to take similar things seriously and/or tips about other strategies for actively pursuing some kind of diagnosis. But also, other possible issues I could ask my doctors to test for, since they seem to be reaching the end of their list of possibilities could help.
My issues that come and go together, I'm pretty sure they're related:
Fatigue, muscle aches, brain fog, feeling mildly feverish/chills, frequent headaches, feeling of being on the verge of getting a uti (sometimes I do end up with one, sometimes I don't. I have, at times, tested negative for urine bacteria while having all these symptoms), mouth sores (but not, I think, the special lupus ones), eczema, muscle tics. This is all significant enough that it makes working difficult when I'm badly affected. This pattern has been happening for almost ten years, but has become increasingly common and more reliably involved most of these symptoms at once.
Issues that don't necessarily come and go together and I'm not sure if they're related:
Very sensitive to temperature...my fingers go numb while others are comfortable, I also get easily exhausted in heat
Occasional weird neurological things, mainly serious muscle spasms in heat (dehydration?) that last for an hour or so and make it impossible to use my hand or, on one occasion also my foot
Arrhythmia that has been investigated in the past with no conclusion or serious concern
Mild asthma
Other relevant info:
Female, 40yo
Repeatedly tested very low for vitamin D, have now been in low normal range for a while due to supplementation
Don't take any other medication
Repeatedly tested for thyroid function, seems normal
Had Lyme about ten years ago before most of this got worst, treated, recently tested negative
Went to a neurologist in case the muscle spasms were a clue, she was dismissive because some of these effects (muscle spasms, notably) have been occasionally occurring for almost 20 years and she said that if it were neurological I would be in a wheelchair by now. When I asked for more testing she offered an EMG, but said she was sure it wouldn't find anything.
CBC and metabolic panel recently normal
Tested moderately high ANA, nucleolar pattern, and "equivocal" for rheumatological factor igm
Negative for everything else in AVISE autoimmune panel (lupus, etc)
Help me help my doctors? |
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