My rheumatologist is not happy. But there is not much she can do.
Firstly though, she made it clear she wasn’t very happy with my neurologist. He hadn’t reported back to her from my initial consult with him, almost eight weeks ago.
So I filled her in.
My symptom list has grown sharply this year. And a lot of those symptoms could be neurological. I have to admit, all of these symptoms get considerably worse when I am exhausted. I have pushed myself very hard physically, to try and achieve impossible goals this year. I have learned the hard way that I AM sick. I CANNOT push my body without suffering pretty severe consequences.
So I have been resting more. And trying to be more realistic.
It’s not easy. It’s still hard to accept that I can’t just do what I want when I want to do it. Spontaneity was a big part of my personality. It’s just not possible anymore. Or not often. Not without support. Someone to help.
Anyway, my rheumatologist is not happy because there is nothing she can do. She explained that she can’t give me another TNF blocker, because of the MS risk. And she can’t give me any of the other biologicals until she knows whether I have vasculitis.
She said vasculitis is very serious, and related to significant morbidity in RA patients. Great.
She also said she felt that my steroid use has been masking problems. That and my ‘tough it out’ attitude. She said that because I have been on moderate to high dose steroids for several years now, that I might not be having symptoms, because the prednisone was masking them. And that concerned her.
She also said it was clear she can’t take me off the steroids, because everything falls apart when I taper the steroids.
Because steroids treat pretty much EVERYTHING. You only have to watch a few episodes of House to understand that steroids are the go to treatment for all things autoimmune, and many other diseases too. In every episode, the patient will at some point be given steroids when they have no idea what’s going on.
Short term, they are a miracle. Long term they are hell. They are lifesaving, but while they are doing that they slowly destroy your body.
She said I might be starting to pay for my steroid use. She thought the MRA could be clear, and it wouldn’t rule out vasculitis in her eyes, because the prednisone could be masking it. She asked me about muscle pain, night sweats. Yes and yes. But, that’s become normal to me now.
Fever, yes. Rashes, headache, fatigue…yes, yes, yes. But really, those are also RA/Lupus (Rhupus) symptoms as well. She agreed.
She openly shook her head when I told her that the neurologist didn’t think it was MS. She said it was crazy that he hadn’t ordered a lumbar puncture. And more bloodwork. She said it’s been a long time since we’ve run everything. So we’re going to. All the usual stuff, plus ANA/ENAs, full thyroid panel, ANCA, anticardiolipin Abs…um…can’t remember what else. She’s running the works.
She’s convinced its MS. She was annoyed he didn’t do the nerve conduction study, as she said she sends patients to him all the time for them. They are quick and simple. She felt he wasn’t taking me seriously.
So what else is new?
I told her about my swallowing issues, and throat spasms and I was rewarded with more head shaking. I told her the neuro said these were not neurological. She said if a barium swallow and an endoscope came back clear, the only thing they COULD be was neurological. So she was happy I’m seeing a gastroenterologist.
So lots more tests. No answers. I liked seeing her fired up. I feel like she’s going to get to the bottom of things. Because there is no doubt that I am a complete mess right now. My whole body is falling apart. And getting worse.
Thank God for your rheumy is all I can say. I hope she’ll light a fire under the neuro and push him to complete his testing and get onto him to take you seriously. She can’t treat you until he does these things. This disease sucks in so many ways and I hope that between them they will be able to figure out your next move.
Thanks Gillian. Me too! I’m very glad I have her on board right now. She is going to push for answers. I really need someone on my side right now!
A good rheumatologist is a blessing. I had an appt with mine a few weeks ago, and I mentioned how so much of this field is guesswork. She said, yes, if someone has diabetes, we know how much insulin to give them, etc. With RA, people vary so much in what works for them, its much more complicated.
I am sorry you’re in such a bad place right now. I do hope things get better SOON.