I had my appointment with the neurologist yesterday, and it wasn’t what I was expecting. Seeing as how I have had yet another stroke-like episode, they found a way to squeeze me in yesterday, rather than wait for April 8th. What we were expecting is that I’d show up, and the neuro would write me a prescription for more potassium via either mouth or IV. What actually happened was that she told me I definitely have an auto-immune disease, and she’s about ninety percent sure it is Lupus, but she can’t fully prove it until I get some more testing. The really good news is that I am not having strokes, my MRI was clean of strokes and brain lesions. Thank goodness!
This is shocking to us. We had assumed that all the symptoms I have been having were related to Ehlers-Danlos and POTS. It turns out, that they probably weren’t being helped because of my auto-immune disorder. I still have Ehlers-Danlos, and that’s not auto-immune, however, the POTS may improve once I have treatment for the Lupus (or whatever auto-immune disease I have).
I’ve never been tested for auto-immune diseases until this point. No one thought I had auto-immune symptoms. I don’t even have any friends that I know of who have lupus either, so I wasn’t entirely sure what to think when the doctor told me this.
She asked me some weird odd-ball questions that I didn’t think were relevant and then she kept saying “that’s probably related to Lupus, but definitely related to whatever auto-immune disorder you have.” Mind boggled. I told her that I just thought I had a bunch of random symptoms, and she said “It’s very common to think you’re crazy and have a bunch of weird medical things that are unrelated until you’re diagnosed with auto-immune. You’re not crazy, and you definitely have an auto-immune disease.”
She’s planning to refer me to a rheumatologist, and possibly a nephrologist. I’ve had 30% kidney damage for quite a while (the last time they checked) and no one knew why. This doctor thinks it’s probably related to Lupus and wants to see if it’s the same or worse. So, a bit more testing is needed. (Nothing terrible! A blood test and a non-invasive test.)
Once we do the blood work, and the other non-invasive test it should let us know if it is for sure Lupus, and if it’s not then she’s hoping the rheumatologist should be able to figure out the exact disorder. There are a lot of auto-immune diseases and while this looks the most likely, it could be others.
Some of my symptoms are pretty severe. I have had numbness in my face, right hand and left foot for months now. I’ve also had terrible problems with my POTS (auto-immune disorders would only make that worse) as well as the weird stroke-like episodes. The doctor did say though, that Lupus is treatable. She says I will need to go on immunosuppressive drugs as soon as she can determine the best one to put me on. It’s possible that the reason why I get a little better and then a little worse is that my Florinef is helping. Florinef is a corticosteroid and is often prescribed for Lupus, but I’d need more help than that. Florinef doesn’t shut off your immune system.
So, I go back to the neurologist in two weeks. At that time she’ll have the two tests in to determine if this is for sure Lupus. Even if it is not Lupus, it is definitely an auto-immune disease without question. We need to narrow it down and treat it to prevent my problems from getting any worse and hopefully get me some quality of life back. I still need to have my sleep-deprived EEG on April 8th to make sure that the stroke-like episodes I’m having aren’t seizures. I guess Lupus comes with seizures sometimes, and low potassium (even mildly low) could definitely set off this type of seizure. It could also be a hemiplegic migraine though. We just don’t know yet. It’s scary to me. I’ve never been on anything immune-suppressive (other than Florinef, which has mild immune suppressing properties, but nothing major like I’ll be on.) and I don’t know what to expect. I’m not looking it up either. I’m too nervous for that. I don’t want to get even more worried. Two weeks. For now, I’ll just have to put this all out of my mind.