After 3 months on Plaquenil and MTX, my latest blood work is normal, including the ANCA which was indicative of vasculitis. I do have some improvement in some of my symptoms, but not the most worrisome one, the entire left-side weakness, occasional pain and numbness. I have to say, though, in the last week there does seem to be a change there too....a little better. Do any of you have normal blood work (after having it be abnormal) and still have symptoms? I'm wondering if I should be asking to move up my RD appointment from October to earlier to discuss this, or just wait a bit longer to see what the MTX can do, as the RD says. What do you think?
Hi Jesse, have you ever been referred to a Neurologist? I'm not very knowledgeable about vasculitis, but does your Rheumy think that is the cause? My first thought was neuropathy. Sorry, I'm not much help, but I do hope you improve.
Deb
Thanks Deb, good call, there is neurological involvement. Yes, I've been to a neuro. who did the initial blood work that found the abnormal counts. I was referred to the RD and haven't seen the neuro since. The RD thinks the left-side problems are vasculitis related neuropathy, meaning the blood vessels on the left side are inflammed and possibly being damaged until the inflammation is stopped. But if the blood work is now normal, doesn't that mean the inflammation is stopped, especially since my SED rate and Anti-CCP is also normal? Shouldn't the symptoms stop? Or does it not always work that way? If it's true that symptoms should stop with normal counts, then I guess I need to high-tail it to the PCP and then the neuro. again. But I'd like to know if my thinking is correct on this first. Thanks everyone. Jesse, did the neuro do an emg or nct?I had a nerve conduction study a little over a year ago, which was normal. However, I wasn't having symptoms at the time the test was taken. Wouldn't that make a difference? But it makes me think maybe it's time for another one since the symptoms are much more constant now. While the inflammtio nmay be gone or signigently improved it may take longer for the nerves to heal. I would suggest that you pay another visit to the neurologist for another evaluatoiin. Also physical therapy may help a great deal in recovering strengthHmm, all roads seem to lead to the neurologist. I've already been giving this some serious thought but haven't done it yet. I guess this really is more the neuro's department and with the new info I have, maybe he will be able to do something this time, in conjunction with the RD. He didn't have a clue before and kept thinking it was MS until the MRIs came back negative. The puzzle continues....