Doc says it’s possibly Stage II Rheumatoid Arthritis; I’m not a happy camper!

My grandmother died when she succumbed to a horrible disease called Rheumatoid Arthritis (RA) – and I have just been diagnosed with a strain of the same disease, let me explain.

Doctors and specialists have been baffled for the last few years as to what ailment is causing me so many health issues, pain, lethargy and general malaise. They know it’s autoimmune-related, but for years I have had blood drawn, tests done and answered a slew of questions about my genealogy, symptoms, other diseases I have and more.

I was told about three years ago that I might have a condition called Mixed Connective Tissue Disease (MCTD), an overlapping condition of three separate autoimmune diseases. I was also told that Lupus (SLE) was a part of that overlap disease and more than likely, MCTD would eventually develop into full-blown SLE.

Now, today I have been to a new Rheumatologist who seems to think that I do not have MCTD – rather Seronegative Rheumatoid Arthritis. Basically, without getting into too many medical details, I tested borderline for RF (Rheumatoid Factor) antibodies, but had a positive ANA (Antinuclear Antibody) with a Nucleolar pattern (not sure what this means yet) and an abnormal/high titer of 1:40.

In layman’s terms or as best as I can explain – My immune system has in fact launched an attack on healthy tissues – from what disease – apparently that is to be determined. Let me tell you the rest of the blood work and maybe we can piece this all together – together.

Here are my results – I will only list the abnormal ones now:

Vitamin D – 19 (should be at least 30-100)

RF – Borderline

MPV – 7.3 (should be 7.5 – 11.2)

ANA – Positive

ANA Pattern – Nucleolar

ANA Titer – 1:40 (1:10-1:160 is positive)

X-ray of hands – shows cartilage and bone damage around the joint. Also, abnormalities of the soft tissue around the joint are evident. (I did not have my elbows or knees, which are other problem areas, X-rayed, just my hands.)

My Rheumy said my MCTD test results are now negative (they were positive three years ago). I’m wondering if this means I’m in remission or whether I was given a wrong diagnosis initially. I was under the impression that once positive, always positive. Maybe I was wrong about that.

My new doc believes that with my chronic symptoms combined with the positive ANA, borderline RF and X-ray results, its more than likely RA. He’s calling it Seronegative Rheumatoid Arthritis due to the borderline RF.

I decided to do a little research on my own that has left me a little confused. Hopefully, that’s where you come in!

First of all, whenever I do a search on the ANA Pattern Nucleolar, it’s pretty unclear what this means. I see where some people with Lupus actually have this pattern and others who suffer from Scleroderma or CREST syndrome, a type of connective tissue disease, also.

A low MPV (blood platelet count) can mean a range of things/diseases, including Leukemia, but the doctor didn’t seem too concerned, so I’m assuming that’s not the case with me.

My Vitamin D levels are whack and have been since I had a severe allergic reaction about three years ago. They are always super low and my doctor has prescribed me a prescription-strength dose to try to get those levels back up to normal.

The X-ray was the scariest part for me. My Nana was so deformed and crippled by RA, the thought of living with the same disease is scary. To see that permanent damage has already taken place is even scarier.

So, for now – my Rheumy has taken me off the Plaquenil (well – I took myself off a while ago due to side effects) and has decided to put me on something stronger, Methotrexate. Doing a search on the side effects of this drug was discouraged by my doctor, but I’m a reporter – so I started digging as soon as I got back from the doctor’s office. Not sure how I feel about the drug yet, but also know what RA looks like without medication. I guess I’ll take my chances! I believe my Nana gave into RA! I REFUSE! I will fight this and do my best to combat it!!!

I was also put on my regular dosage of Levoxyl for my autoimmune thyroid disease and told to return every 6 weeks for blood work due to the harshness of the Methotrexate.

Now I need to see a dermatologist if my skin rashes continue. I keep getting these scaly/round spots on the back of my knees and now there’s one on my face. The Methotrexate is supposed to help with that, but if it doesn’t by February – I’m off for a biopsy.

I also need to have my eyesight checked. Have been having massive headaches and vision problems since going on the Plaquenil.

So – that’s basically all for now I guess. Hoping that with a healthy diet, the right joint exercises, the powerful meds and following the doctor’s orders – I can beat RA!!! Based on the classification scale, I’m only in Stage II – and although it’s incurable, I think it will be manageable (I hope).

Love you friends. Until next time!

~Allie

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About Imkjac

I love my work. I also love the following things: God, my boys, my family, dogs, cats, writing, photography, reading (a bit of a lit geek actually), cooking, being outdoors, hiking, fishing, film, music, Spotify, beards, tattoos, board games, TV (also a TV geek), Netflix, pajamas, antiquing, interior decorating (DIY), blankets, polar bears, art, food. I dislike these things: elevators, heights, unclear water, bridges. Thanks for reading my blog and hoping it brings some comfort and joy to others.
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2 Responses to Doc says it’s possibly Stage II Rheumatoid Arthritis; I’m not a happy camper!

  1. Lisa says:

    Allie, my Aunt Laura asked about you over Christmas and had some suggestions for you. You know her son, only 11, has suffered with many of the same things and diagnoses as you and has been on methotrexate for awhile now. She has done a ton of research and while keeping Ethan off of gluten has helped it hasn’t solved everything. She has now begun the process of becoming truly gluten free (including grain). She wanted me to suggest to you that you research Dr Peter Osborne (sugarland, TX) and read some of his research (gluten free society). Sounds like you and Ethan have a LOT in common. She also said to feel free to reach out to her. She can tell you about the side effects of the medication.

  2. Awesome. Can you private message me her contact info? Maybe an email address? I have been Gluten Free for years, also. The only grains I eat are corn-based.
    I will definitely do some research though and look up Peter Osborne. I’m also anxious to learn more about methotrexate. I have been quite dizzy the last two days and hoping it will subside. I worry mostly about functioning with the nausea — and mouth sores and hair loss. My hair has already thinned so much with the other meds 😦

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