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  • Suspect Autoimmune Disorder, But Doctor Wonít Test

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    Old 06-11-2018, 09:04 PM   #1
    zoegirl622's Avatar
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    zoegirl622 HB User
    Suspect Autoimmune Disorder, But Doctor Wonít Test

    25 yo female previously diagnosed with Polycystic Ovarian Syndrome and Hypothyroidism.

    I suspect that I may have an autoimmune disorder, but my doctor doesnít seem at all concerned and isnít ordering tests.

    I have had pretty serious symptoms for quite a few months now, but the last few weeks have been really bad. I started getting infections about 6 months ago CONSTANTLY. Many cases of strep throat, ear infections, upper respiratory infections, and sinus infections. Iíve been on tons of antibiotics. As soon as Iím off of them and start to feel better, I get another infection. Iím currently on my second round of 10 day antibiotics for strep, as the first 10 day round didnít clear it.

    My doctor did general blood work, CBC, glucose, TSH, etc. He said they were fine. Sed rate was elevated, as well as 2 different tests for liver function, but he said it wasnít a concern. He figured it was just a rough cold & flu season.

    After another infection, he finally ordered an immunity panel. Most types of immunoglobulins were fine, but my IgA was at an undetectable level. Nonexistent. So he said I have Selective IgA Deficiency and referred me to an immunologist. The soonest available appointment with the immunologist is over four months away. My doctor doesnít want to do any other tests, just wants to wait the months for me to see a specialist. He hasnít even ordered any type of ANA tests or anything. And from what Iíve read, people with an immunodeficiency have an increased chance in developing an autoimmune disorder as well.

    In the meantime, my symptoms have been escalating quickly. The last few weeks I havenít been able to function at work, keep having to take time off, and spend all my free time sleeping or resting in bed. Iím exhausted!

    Here are the symptoms I now have:

    Low grade fevers off and on (higher grade during infections)

    Fatigue (to the point of exhaustion, no matter how long I sleep)

    Achiness, muscle weakness

    Joint pain and lower back pain

    Pressure in chest

    Acquired nystagmus

    Rashes (particularly on face), and dry sensitive skin

    Numbness/poor circulation in hands and feet: wake up with arms numb, feet fall asleep when sitting

    Recurring infections (not easily resolved)

    Hair loss, eyelashes falling out


    Mouth sores and inflamed gums

    Frequent bruising and blood blisters

    Weight gain and weight loss, weight fluctuating a lot

    Constipation and diarrhea

    Jaundice during one of my illnesses

    I donít know what to do at this point. I feel like Iím not being heard or like my doctor thinks Iím crazy. I canít change doctors with my hmo. I just donít know how to function like this and am very concerned that something is seriously wrong. Plus Iíve had to miss tons of work and I live paycheck to paycheck.

    Does anyone think these symptoms sound anything like an autoimmune disorder? Any ideas on what to do regarding my doctor?


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    Old 06-12-2018, 02:13 AM   #2
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    Re: Suspect Autoimmune Disorder, But Doctor Wonít Test

    Your doctor is probably not ordering more tests because he isn't qualified to decide what to order or what to do with the results. He has sent you to a specialist, and it is not his fault the specialist is booked for months.

    Have you considered trying to find another immunologist? Or, calling the one you booked with and requesting that you get put on a cancellation list so that if someone cancels their appointment they call you? It actually works! I lucked out and got in to see a doctor 2 months early just yesterday because I called once a week asking about cancellations!

    To me, your symptoms sound like infection, not autoimmune. I live with autoimmune and none of those symptoms happen to me, but that does not mean it isn't possible. I would not be seeing an immunologist, I would be seeing an infectious disease doctor...they have much more experience with sed rates and blood work and know which blood work to order to look for autoimmune diseases. Can you find an ID (infectious disease) doctor who can see you?
    RRMS- dx 05

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    Old 06-12-2018, 06:16 AM   #3
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    Re: Suspect Autoimmune Disorder, But Doctor Wonít Test

    Thanks for your response.

    I am on a cancellation list for the immunologist, but they said there are quite a few people on the list so not to expect to get in much earlier.

    There are only 2 immunologists that work with my insurance, so thatís the soonest available.

    My doctor said he forwarded my charts to an infectious disease specialist, but they didnít recommend anything.

    I do agree that he may not be qualified and doesnít know what to do at this point, but I also feel like thereís a lot of general blood work that hasnít been ordered and other conditions that arenít being considered.

    Iíve gotten to a point that it is extremely difficult to function, so Iíve considered just going to the hospital, but tests at hospitals are very expensive through my insurance.

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    Old 06-12-2018, 08:30 AM   #4
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    Re: Suspect Autoimmune Disorder, But Doctor Wonít Test

    Dear zoegirl,

    You should be able to get a second opinion outside of your medical group paid by your insurance. I think that is the law.

    Check doctor names out on Yelp to see what other patients are saying before you decide which one you want to see. I would not stand for a doctor that acts like he is working for the insurance company rather than my health. Sadly some doctors do get kickbacks from insurance companies. I have General Practitioners that are more attentive and find solutions better than some specialists. You may just need a different GP.

    You also might not have an autoimmune disease and just need to change your diet and may need different thyroid treatment. At any rate, the specialist will know what tests need to be ordered. A GP probably wouldn't know.
    ~ YaYa ~

    Last edited by yayagirl; 06-12-2018 at 08:34 AM.

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    Old 06-19-2018, 09:06 AM   #5
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    Re: Suspect Autoimmune Disorder, But Doctor Wonít Test

    I have selective IgA deficiency and you have had the test that
    shows that you have it too. I feel sad that you have to deal with this condition also. I found most doctors and immunologists did not know much about it and that I needed to be responsible for my own treatment because the pharmaceutical companies don't have a way to make money off of the treatment. I found it to be very debilitating for many years until I found a treatment that worked for me for the constant sinus infections that caused the headaches and other symptoms.

    I started treating it myself when I got tired of taking all the oral antibiotics all the time. At first, I took a antibiotic capsule and shaved it down to a powder and snorted it directly into my sinuses. Later, I worked with my immunologist and a compounding pharmacy to make up antibiotic droplets that I lean back and put drops directly into my sinuses. I do this 1 to 3 times a day and try not to swallow them. It creates a lot of sneezing so I buy cases of Kleenex tissue.

    When the constant sinus infections stopped, my whole life started getting better once more. These constant infections can cause many of the other problems you are having especially the muscle aches, exhaustion, and loss of energy. Selective IgA is the lack of defense in your sinuses only and is an immune disease not an autoimmune disease as far as I know.

    I have slowly come around to having a fairly normal life once more, except for taking the nasal antibiotics so often, and for this I am grateful. Hold onto hope and I pray you find a way soon to stop the crazy cycles of symptoms that come with this condition.

    Last edited by Cayroo; 06-19-2018 at 09:31 AM.

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    autoimmune disorder, iga deficiency, lupus (sle), multiple sclerosis

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