Confused and Frustrated

[mykids10]

So within this year I have been having some things go on that are frustrating me. First it was tingling and soreness in my left arm. Went to my dr and he referred me to a chiropractor who says my neck is misaligned. I start getting adjustments until I couldn't afford it anymore, maybe 3 months. Then in June I start getting dry and blurry eyes off an on, which I assume is due to new glasses but it lasted way too long for that to be the issue. Around this time I get all over ransom body/muscle achiness. Nothing too severe, just annoying. If I remember correctly this kind of goes away, either that or I got used to it. The end of September my whole family gets pneumonia and about a week after I stop treatment I start developing what I think are joint pains. I first felt it in my elbow, then my hands would hurt and be stiff, then I felt it in my shins and feet. Again not severe but I wondered where this came from. In November I notice what looks like a splinter hemorrhage in my thumb nail. It was a very small brown line that I could scrape off my nail. In doing research I began thinking I could have scleroderma/ lupus, however all my ANA tests keep coming back clear. I've only had the basic ANA done which tests centromeres and scl-70 and the other autoimmune tests and they've come back negative twice. However I hear they can come back negative but really be positive. I've been to 3 drs and they all tell me to wait it out another month to see if joint pains stop. The only other symptoms I've had recently is a lump in throat feeling and cough which I've read can be caused by GERD/silent reflux and I have ALL thy symptoms of silent reflux. I don't want to wait it out and have whatever this is progress to something worse. I have 4 young kids who need me! The only rheumatologist I can see without a referral doesn't have an opening until April. Other than that the rheumatologists don't like to see you if your labs are clear. I'm freaking out here. Should I see if I can get into a different dr and see if they can run the ANA IFA test which tests most of the scleroderma antibodies? Does anyone know if a primary dr would test for this? Also the "splinter hemorrhage" that was in my thumb is now a red streak that kind of splits in half. It's been that way for over a month. I anyone can help I would appreciate it a ton!!

[mykids10]

Thanks for the info :). I have done quite a bit of research on the different types of scleroderma and visited a scleroderma foundation forum and talked to some members. I too was thinking of CREST form of that is indeed whats going on. I understand it would be a medication for life type of thing which is why I'm wanting to get this all done sooner rather than later. The last dr I saw took more interest in my symptoms than any other dr has but he too said if my lab work comes back ok then a rheumatologist won't see me. I don't understand how I'm supposed to get a rheumatologist to be able to look at my physical symptoms if I can't even get in to see one. I've thought about the thryroid possibility as well and was going to ask for those tests too with the next visit to my dr. Last time I had my thyroid checked was in April before any of this had gotten out of hand so to speak and that came back ok as well. Whatever ok is according to the dr, I don't know, but something is going on and I'd rather it be the thyroid issue vs scleroderma. It's just all so frustrating when I know there's something different about me but I can't get a dr to do further testing or refer me to someone else. I am trying hard to be proactive with my health rather than just sit back and let things continue to get worse. Do you have any suggestions of how to get into a rheumatologist without a referral? I have no insurance at the moment btw, so I've been paying out of pocket, hasn't been too bad so far. Thank you for all te suggestions and help though I really do appreciate it all!

[TheLightSeeker]

The tests you have mentioned you had and the ANA IFA are NOT diagnostic.
They are of diagnostic value, but the diagnosis has to incorporate positive
test results (which may occur in healthy individuals as well!) and significant
presence of clinical criteria, as determined by your specialist (rheumatologist).

Some of your symptoms point to some variant of CREST or as more recently renamed Limited Systemic Sclerosis.

Unfortunately you are after a medical label with no cure, as the conventional medical model, even with a dx, won't be able to help you much.
The sad part is that  there's a possibility,  if and when this takes place, you will be on symptom ameliorating meds, probably for life.

My suggestion is to look into two or rather 3 different possible underlying
imbalances/conditions usually not investigated by conventional doctors.

1. Low Thyroid Function. Free T4 , Free T3 & Reverse T3 levels (not serum levels of T3 & T4, as they do not indicate cellular function, same with TSH)

2. Low Adrenal function. This is never checked until it becomes a crisis!
Yet sub-clinical low adrenal function ( adrenal fatigue) is enough to cause
a complete hormonal imbalance with many severe symptoms and also affect thyroid function!

3. Tension Myositis Syndrome. Look into the work of Dr. John Sarno,
Professor of Rehabilitative Medicine at the NYU School of Medicine
and author of many books on the subject of pain. Very informative.
If you want a link to a  free online 2 Hour video lecture , including treatment, send me a message.

I hope the above suggestions help, however, this is not intended as a substitute for medical advice.

Best wishes.
Niko