Had my follow-up with an MS specialist today. Last appointment (6 weeks or so ago), she looked at my MRI with me and said my neuro and cog issues were either from CNS lupus or early MS. We agreed I'd get an EEG, since I seem to be having seizure-like episodes, as well as a neuropsych evaluation, since it's apparently a good way to determine if the cognitive issues are due to CNS lupus.
So, today was my follow up. She obviously didn't read my chart, she decided before she walked in the room that ALL of my symptoms are from epilepsy (????) and sleep dep! Apparently the epileptologist last week gave the impression I have a lot of anxiety AND seems to think I have epilepsy. Then she said I probably have steroid-induced muscle weakness, which my rheumatologist has said is basically is impossible at the dose I'm on (10-15 mg/day, for maybe the past 2-3 months). She didn't understand why I haven't had neuropsych testing (her office has screwed up, I've called 3 times on it) and basically said, 'there's no way I can predict if you'll get MS or not'. I pointed out SHE saw 3 or 4 lesions on my last MRI and said it might be early MS, she was very confused. Then she said, "I don't have enough evidence to write you out". She said that several times and finally I said, 'wait, write me out of what?" she said 'your work'. Lady, I don't HAVE A JOB.
Then she asked if I'd had labs, which they had in the computer- she went, 'oh, you have labs proving you have active lupus!' no @#$% sherlock. She had forgotten I have lupus. So then she said maybe it's CNS lupus and I was like, yeah, you said that last time, remember? I don't CARE what I have, I just need some help, I can barely take care of my kids. She said, 'well, ask someone to help.' wow, that was helpful . Ugh. So then she said maybe I have muscle weakness from being so much more active recently, taking care of my kids. I said, 'except NOTHING about that has changed in 14 months, yet I'm suddenly severely weak.' I had just told her about walking to the end of the block with my 2 year old, then having my entire leg go dead a few hours later, a symptom that lasted about 36 hours.
So now I have to get the neuropsych testing, then she wants EMG testing to see if I have muscle degeneration. Which I've had, years ago, and it was the most painful thing I've ever been through. I pray it was the inexperience of the tester last time. I have a 3 day EEG coming up later in november, too. I asked repeatedly if there was some kind of symptom relief for the cognitive issues and the weakness, she kept saying, 'I can't treat you until I know what's wrong'. UGH. Fine. I'm willing to give her one more chance, since it's possible she had a bad day and/or confused me with another patient- she was great last time.
I think one of two things happened- either she read the epileptologist's report and didn't remember anything from her previous appointment with me, or she literally looked at someone else's chart before walking in.
She got testy when I said I don't really care about a definitive diagnosis, I just want to be able to function and care for my children- she said, 'well, you have two neurologists following you, what more do you want?'
So, today was my follow up. She obviously didn't read my chart, she decided before she walked in the room that ALL of my symptoms are from epilepsy (????) and sleep dep! Apparently the epileptologist last week gave the impression I have a lot of anxiety AND seems to think I have epilepsy. Then she said I probably have steroid-induced muscle weakness, which my rheumatologist has said is basically is impossible at the dose I'm on (10-15 mg/day, for maybe the past 2-3 months). She didn't understand why I haven't had neuropsych testing (her office has screwed up, I've called 3 times on it) and basically said, 'there's no way I can predict if you'll get MS or not'. I pointed out SHE saw 3 or 4 lesions on my last MRI and said it might be early MS, she was very confused. Then she said, "I don't have enough evidence to write you out". She said that several times and finally I said, 'wait, write me out of what?" she said 'your work'. Lady, I don't HAVE A JOB.
Then she asked if I'd had labs, which they had in the computer- she went, 'oh, you have labs proving you have active lupus!' no @#$% sherlock. She had forgotten I have lupus. So then she said maybe it's CNS lupus and I was like, yeah, you said that last time, remember? I don't CARE what I have, I just need some help, I can barely take care of my kids. She said, 'well, ask someone to help.' wow, that was helpful . Ugh. So then she said maybe I have muscle weakness from being so much more active recently, taking care of my kids. I said, 'except NOTHING about that has changed in 14 months, yet I'm suddenly severely weak.' I had just told her about walking to the end of the block with my 2 year old, then having my entire leg go dead a few hours later, a symptom that lasted about 36 hours.
So now I have to get the neuropsych testing, then she wants EMG testing to see if I have muscle degeneration. Which I've had, years ago, and it was the most painful thing I've ever been through. I pray it was the inexperience of the tester last time. I have a 3 day EEG coming up later in november, too. I asked repeatedly if there was some kind of symptom relief for the cognitive issues and the weakness, she kept saying, 'I can't treat you until I know what's wrong'. UGH. Fine. I'm willing to give her one more chance, since it's possible she had a bad day and/or confused me with another patient- she was great last time.
I think one of two things happened- either she read the epileptologist's report and didn't remember anything from her previous appointment with me, or she literally looked at someone else's chart before walking in.
She got testy when I said I don't really care about a definitive diagnosis, I just want to be able to function and care for my children- she said, 'well, you have two neurologists following you, what more do you want?'
Comment