MRIs, calm after storm, and results limbo

[elinora]

Maybe a couple of months ago now, I became ill with something inconsistent with the symptoms of MG for which I take high doses of steroids and immunosuppressants. It was an acute onset of paresthesias accompanied by fatigue and sleeping. The worst of them were deep in my pelvis, lower back, and hamstring attachment area. I had different losses of sensation on different parts of my body. Eventually this all settled down, except that by exercising in the heat I can reproduce some of the deep, cold sensations. My cheeks still feel cold, but I no longer feel "bug bites" or relentless cold patches. I think sensation is returning to normal in some places. My backs of my legs, however, feel tight, as does my left arm. I still feel fatigue between 11 am and 7:00 pm, though the slow thoughts have diminished, and I can usually think, even when tired. My left leg is weaker than the right, but I am not sure about the arms, which are generally weak because of MG. I have had recurring spasms of my pelvic floor area. My eyes are too much a mess to even describe, which could be from MG, steroid induced cataracts, or disease X.

Yesterday the normal results of an MRI of thoracic spine were posted in my online medical records space, but the results of the MRI of my cervical spine (also done on Saturday) were not posted. This is a problem because my neuro only works at the U on Mondays and because next Monday is a holiday. So... I have entered limbo's own limbo.

Maybe administrative incompetence is at work here, or maybe bad news is expected to be delivered at the very least by phone. Either are plausible, but I am not sure what to do. Perhaps if I have not heard back by morning, I shall call my neuro's nurse.

My doctor took blood to test for Sjogren's, though it seems unlikely I could have become acutely ill from Sjogren's while taking high doses of the drugs used to treat flares of that disease. Furthermore, I have no fibromyalgia, joint pain, etc. Those labs, along with CBC and liver function tests (because of immunosuppressants), are not available yet either. What do I know though?

I am not even sure what I am asking? How long does it generally take to get back results? Have any of you had similar experiences with acute onset of weirdo symptoms followed by back offs? It is all so frustrating.

[JerryD]

Sorry to hear of your problems. It, sometimes, takes a long time for the doctors to rule out everything when it comes to neurological disorders. And what you have described seems to be neurologic. I would suggest that you be concerned with your vitamin D and B-12 levels, as well as the other stuff. Good luck

[22cyclist]

Generally, if your test results are bad they either call you the night of the MRI, or the next day (working day). I have been called for a big brainstem lesion on a Saturday and I am already diagnosed...been so, for a while now. Perhaps this is good news. I certainly hope so. Whatever it is, we are here for you.

Let us know how it goes.

Take care
Lisa
Moderation Team

[elinora]

Thank you, both. I am blessed with an excellent neurologist (who is an MG specialist), and he has checked off many boxes. He felt we would not see anything g "at this time" but wanted a baseline. The fatigue is very difficult to deal with, and I am sure there is something neurological involved. Because I was an endurance athlete, I stressed my body I ways others do not and exposed problems early on, though what I have been seeing recently, despite the many poisons I take, could not go unnoticed by anyone. Part of me would like to see the evidence now so that I could proceed with treatment. I am waiting for Sjogren's antibodies tests, too. Thanks for the helpful feedback!

[elinora]

Well, they have misplaced my MRI, and I'm still waiting for them to find it. In the meantime, I've lost almost all my strength in my left hammie and glute. I feel resigned for now to being sick but knowing nothing.

[elinora]

I called my doctor's office on Wednesday to ask about my cervical spine MRI, which, I learned, was missing. Incidental to the narrative but unrelated to possible MS was the fact that I also asked to go back up to my full dose of methylprednisolone for MG symptoms, to which my doctor replied affirmatively. On Friday I called to ask about the MRI, and while I was waiting for a call back but having trouble with my mobile, my neuro himself got sent straight to voicemail, where he left the message that he had called to talk about my issues and that he would call back. I never heard back, though my phone may have been the trouble again. Now I have this inscrutable situation to keep me company over the long weekend.

My right cheek has been tingling and feeling as though it is pulsating, which it is not, since yesterday, just when my body had been settling down and when sensation had been returning to parts after the long "exacerbation of something" that started in May. I am getting sleepy again and feeling more foggy in general so I worry something is brewing.

Anyway, that's the MRI debacle.