Help with understanding test results

@becsbuddy I appreciate your continued support. Reading your bio about the "clippers" informed me about how serious some of the auto immune disorders can be, especially if undiagnosed and unresponsive. Geeeez! While "googling" the "clippers" (out of curiosity) I came across the GARD site-they tell a bit about MCTD which (I believe) my antibody tests "flag" for.

Currently. I am considering trying to get an appoint at nearby John's Hopkins Rheumatology dept. They have 7 disease-specific Centers for rheumatology-but I would need a dx first in the general Rheumatology, before being seen in one of the centers, I suppose. But they also don't list MCTD though-which (I believe) my antibody tests "flag" for.

Another option is to see an Allergist/Immunologist in the same office as my kind and caring ENT and maybe she could recommend how to best get my auto immune blood test results addressed (for real). The appeal of this plan is that I DO have extreme allergy/sinus/eosinophilic problems-but DON'T have joint/arthritis issues. And the Rheumatology practices near me all seem to specialize in joint/arthritis auto immune issues-the "kind" I don't have.

Another option still could be to see a (real) Pulmonologist. I did see a NP in a Pulmonology office a few years back for breathing problems (a new symptom). She did lung and allergy tests (but no auto immune tests) and suggested I had "something like an overreactive immune system problem" but looked no further. Maybe a Pulmonologist doc could take this further, in light of my new test results.

Fortunately, I am not in critical condition and can take my time trying to figure how best to move ahead. What I wish to avoid is wasting my time, effort and health care resources on "do nearly nothing" office visits.

I am so happy that some have been able to get the help they need. Florida here as well. No help for me either. I’m 58 and I’ve been very ill for over 22 months and getting more ill as each day passes. My PCP on our monthly visits still asks, “ how’d it go with the infectious disease doctor”? My reply is, every visit, I haven’t seen one?
I’ve been waiting to see a infectious disease doctor for 16 months. My PCP was helpful in the first few months but since, I’ve been on my own. There is just no help. And because of this long wait, I have pretty much been home bound and now have 5 very serious conditions. It’s very scary. I had a history of good health up until 22 months ago, I cannot get into the Mayo Clinic until I get a referral from a infectious disease Doctor. It’s so hard knowing ,waiting, watching, as each day passes and no help.

Hello @grace26 and Welcome to Mayo Clinic Connect! We’re glad that you are here. That’s terrible about not being able to see an infectious disease doctor for 16 months! Unbelievable! I’ll give you the same advice that I gave to @rebaba. You need to find a comprehensive medical center or university hospital. They are much better at seeing patients rapidly and figuring out what’s wrong. Or, try calling one of the organizations:
GARD Genetic and Rare Diseases organizations. https://rarediseases.info.nih.gov/
NORD. North American Organization for RareDiseases https://rarediseases.org/
They keep lists of rheumatologists who specialize in rare diseases.
As for a referral, your PCP should be able to help you get in to Mayo! They can get all of your medical chart together and mail it in, especially if you’re home bound and have 5 conditions.
Does this sound reasonable to you? Can you possibly call your PCP tomorrow and set up an appointment to talk about this? I know it’s a lot, but we have to get you some help! Will you let me know what happens?

How about seeing a hepatologist?

i have both a superb pulmonogist and an excellent and compassionate allergist/immunologist. however all the rheumatologists have asked me why i’m
there. i have multiple autoimmune conditions but they are treated by my allergist/immunologist and my pulmonologist.

where in florida are you!

@elisabeth007 I believe my liver tests have always been good on the CBC panels, I have had repeatedly high eosinophils over the years though on the CBC panel, which have been ignored. I Did unexpectedly develope a severe Vit D deficiency later in life. I just learned last night that low Vit D is a "hallmark" with auto immune patients according to the following site: (Yes, I have resorted to Youtube videos at this stage of my desperate hunt for info. Snork!) Another addition to my list of symptoms.

Connective Tissue Diseases Webinar-Rheumatology.physio/shop Jack March

@elisabeth007 Does this mean you don't have joint/arthritis problems? I don't either. I am getting the "impression" that Rheumatologists don't want to Dx and treat auto immune diseases and instead really want to treat patients with joint /arthritis problems. The "arthritis pain clinics" they work at are a "hint". I guess the problem may be that the PCP's (like mine) who send patients to Rheumatologists for auto immune Dx, may not know what else to do.

I have found a few Rheumatologists who do specialize in auto immune (instead of joints), but they are heads of depts. at teaching hospitals, and don't accept Medicare. That's my dilemma.

I am beginning to wonder if I truly need a DX from a Rheumy (who specializes in joints) to begin with and may be better off focusing my efforts on finding a good pulmonologist and an allergist/immunologist instead. At least for now and then go to Mayo clinic Rheumatology when I'm feeling more up to the trip. May I ask how you found your two good specialists?

And, while this is all new to me, as long as you have the "formal" Dx that you believe correct and necessary - why continue seeing a Rheumatologist (if you don't have joint issues?)

i do have osteoarthritis and meniscus tears in my right knee but that is NOT an autoimmune problem. i use PCP’s very infrequently and select my own specialists getting numerous opinions. i have original medicare and am grandfathered in to a plan F medigap supplement and am not at the beck and call of any PCP. This website is the first place that ive seen so many people are going to rheumatologists for auto-immune problems. i have an excellent endocrinologist who treats my my thyroid auto-immune disease. i just want to Mayo Jacksonville and find it such a logistical mess with no access to supervisors, i don’t want to go back. Radiology refused to upload my image of previous MRI’s for comparison. They then wrote a highly superficial report citing they had no MRI’s to compare. i had three different sets of MRI images on CD’s radiology refused to upload. They attempted to convince me they are too big and efficient to upload comparison MRI images. i was so stressed and frustrated that i got an asthma attack and a migraine during the MRI. Has anyone else been treated like a cog in the wheel by Mayo Jacksonville? Neurosurgeon Richard Byrne was excellent in a video appt yesterday at Mayo—helpful, reassuring and highly professional,..and his office helped get the images from another provider via powershare.

for what ever it’s worth, i do not believe that vitamin d defiency is always a hallmark of auto-immune disease. in my situation, albeit i have osteoporosis i can only take a low dose of vitamin D. I have that monitored by endochrinologist. Wishing you all the best