I felt so defeated when I wrote Tuesday’s post that I honestly did not expect to write again for weeks but I’ve now got a lot to say.
First off, I’d like to talk about the neurologist I saw. While he was very generous with his time, I don’t trust anything he told me concerning MS. Granted, he’s not an MS specialist, he’s a Parkinson’s/movement disorder guy so he shouldn’t be expected to know everything about everything, but he said some things I knew to be patently false, that contradicted common knowledge found on the National MS Society site (or any MS website) and refuted so many of the real patient stories I’d read. No sir, my crazy itching is not coming from sensitive skin, the heat connection is very real and certainly not “rare” by any stretch of the imagination (this was so blatantly bogus it was kinda shocking), the fact that I’m able to take 4 mile walks should not in any way diminish what I’m dealing with (“You walk 4 miles? That’s a lot! Most people don’t do that”), and “Can’t you change your route?” is not an acceptable answer to my telling you I can no longer even run across a busy street.
Then there are the MRIs. The doctor didn’t go over the reports with me, I had to ask for copies as I was leaving the office. While the brain MRI says there are no lesions to suggest MS, there are hyperintensities and my cortical sulci are “slightly more prominent for stated age of 52”. Hyperintensities can appear with age but in 2012 I had none, nor was my cortical sulci noted, so something has changed from then to now and I would have wanted to at least talk about it. I considered calling the doctor to discuss it but realized he’d just leave me infuriated. Dr. Google tells me the cortical sulci prominence means my brain is slightly more atrophied than should be for my age – the sulci is where our memories are so that sucks, but I’ll patiently wait for the next neuro to get a real explanation. Because there is definitely going to be another neuro.
Huge thanks goes to my dear friend Simon who insisted that this doctor telling me “there’s nothing more I can do” when he hasn’t done anything aside from ordering 2 MRIs, is not supplying a satisfactory outcome and that I need a second opinion. I almost resisted Simon’s advice, preferring to believe “doctor knows best” but the situation rankled and the more I thought about it the more I was sure Simon was right.
So my next neuro appt is with a bona-fide MS specialist, because if I’m going to be told yay or nay it will be from someone who knows their shit. My appointment’s not till mid-April but hopefully I’ll get an earlier cancellation.
I Saw A Hepatologist Today
Speaking of cancellations, I got in to see a hepatologist (liver guy) today to check out the MRI blob and by wonderful coincidence, it was the same doctor from the hospital 2 years ago who fought valiantly (though for naught) against the neurologists’ diagnosis of blood stealing. Having him on the case is fantastic not only because I trust the guy but because every time I have to tell my story it’s like having to recite War & Peace, so convoluted, complicated and long as it’s become. To my joy, he remembered the situation very well, saving me a lot of explanation, though he was certainly interested in where it’s taken me.
My liver is surely A-ok, it felt normal to him as he was thumping me and since I’ve not had any liver-related symptoms, the CT scan he ordered and the liver blood tests are just to be on the safe side.
And Then There Was Saturday: New Symptom Complete With Evidence
My life has become rather twisted. Instead of dreading new symptoms, I now embrace them in the hopes that they might bring me one step closer to a diagnosis. The best kind of symptom supplies photographic evidence and on Saturday afternoon I hit the jackpot.
As mentioned, for the last 3 months my exercise has been limited to long walks in the park – I haven’t cracked a real sweat since my last run in October. But on Saturday, after being stuck in the house for a couple days due to negative windchills and ice I thought it’d be fun to do a little exercise DVD from my pre-running days, something super easy and totally low-impact just to work up a sweat again.
So I pulled out “Walk Your Way Slim”. I’m admitting this most embarrassing detail, not to impress upon you how low the mighty have fallen but to let you know how little it took for the following events to occur.
I start the workout and a couple minutes into the warmup, it comes to my attention that the toes on both my feet are completely numb. I look down (I’m doing this barefoot on a yoga mat) and note that my toes are so ghostly white, they’re almost green. I stop a moment to feel them expecting them to be frigid but they’re warm so I figure this is just a passing oddity and will right itself once I’m warmed up. But it doesn’t.
For the entire 45 minutes, they stay numb, white and damned uncomfortable but I’m entranced enough by the oddity of the situation that I press on to the finish, though stopping a couple times to take photos. By the end of the workout, my toes are still white and numb but now they’re also cold to the touch. From warm to cold while exercising…must have been Opposite Day.
Afterwards, I sit down and watch my toes turn purple before settling back to normal. A quick Google search (and confirmation today by my hepatologist) leads me to Secondary Raynaud’s Phenomenon – “secondary” because it’s stemming from whatever has been ailing me and of the listed possible causes I’m picking this one “Diseases and conditions that directly damage the arteries or damage the nerves that control the arteries in the hands and feet”.
But wait, there’s more.
During the workout I started itching. That in itself is no surprise since raised body heat is a guaranteed trigger for it, but upon finishing the video and for the next 6 hours solid, I experience the worst non-stop “Fuck, when is this going to end?!” misery itching. Around 7:30pm it settles down in magnitude and number of locations but remains at a high level until I go to sleep around 2am. Even the next day, I was still itchier than usual.
The moral of this story is that “Walk Your Way Slim” packs one venomous punch. But really, that I’m messed up. It was like I OD’d on sweat and had a hangover the day after. And while I totally see the humor of this, it’s a real pain in the ass that exerting myself in this most minor way results in such a dramatically uncomfortable outcome. Putting aside what this might mean as time goes on, for the moment I’m very happy that it happened. More grist for the mill, as they say.