So, maybe they make you wait so long to give you a "definitive" diagnosis, so you have time to get used to the fact you have it. The neurologists told me prior to being discharged that only time, and how much of the sensation in my left side returned would confirm my diagnosis and the type of MS I might have. But they wrote it in my chart. All of it. Transverse Myelitis. Left Sided Numbness. Neuropathic Pain. and MS. Fast forward from my discharge to my follow-up in the MS clinic, where I saw a colleague of the doctors who not only saw me inpatient, but also diagnosed me. He says he doesn't think I have MS, he's not concerned with the old lesions on my brain, but very concerned with the active one on my spine. He wants me to see the neuro-immunologist here in Charleston (like the only one in SC, and apparently the MS expert), and his soonest opening is early October. WTF?!??!?! My appointment has since been moved to early August due to a cancellation. Meanwhile, he schedules me for another lumbar puncture and an MRI. In THIS LP (lumbar puncture) they checked for things they hadn't checked for previously, as well as some of the same things. One of the previously unchecked things was blood cancers. That test was negative, praise God. The results that had led them to my initial diagnosis of MS, remained pretty much unchanged. I had to wait 3 months from my original MRI to have the next one. That happened this past week. The lesion on my thoracic spine has shown marked improvement, even though I still have a major area with loss of sensation in the left rib cage area (where it all started), and a great deal of neuropathic pain. The PA told me that they improvement in the lesion is consistent with the IV steroid infusions. And also consistent with what they see with MS. (are you seeing a pattern here?).
I am exhausted almost all of the time, the heat makes it worse. I've now developed twitches in my right thumb, left index finger and weakness in both arms/hands. To the point it's difficult to even hold my cell phone for very long or type for extended periods of time (not to mention the typing errors I now have). Add to this, more stumbling, forgetfulness and oh this is a good one-most of the time I try to say shopping center, the term subdivision comes out instead. So who knows? I just know that I had hoped to be on some sort of disease modifying medications at this point and feeling better. Granted, I don't want them to just throw me on something willy nilly, but you can see why I am so frustrated. I have a new grand baby coming soon, and I want to feel well enough to be able to help out with her and enjoy her.
So, to me right now, MS is BS. All of this is. Hats off to all of you out there dealing with health issues, resolved, active or whatever. It's ridiculously hard to stay positive when you don't know what to expect or when to expect it.
Hang in there-you are not alone. Even though it feels like it because people don't know what to say, ask or do. And you just say you're fine most of the time when they ask you because you figure they don't really want to hear it. I will listen, I am here.