Saturday’s Gift & A Second Wind

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”.

I sincerely apologize for showing these disgusting gnarly old-polish-growing-out troll feet but I had no idea this was going to happen or I’d have made them cute beforehand. I’ve since given myself a pedicure with plans to do the workout again so I’d have cuter photos but screw it, I’m not going through that shit again. Anyway, note how the whiteness even spreads into the ball of the foot.

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.

19 thoughts on “Saturday’s Gift & A Second Wind

  1. Ilana

    Yay, sort of, for more evidence of…something! I hope you get your appointments moved up and your diagnosis made soon. (And sorry you had to deal with a jackass neuro.)

  2. Doggie Pound

    How fortuitous I checked your blog today. I’ve been thinking about you (and am planning on calling you this week so get ready!) and here we have an update.
    This is crazy it’s taking this long to figure shit out. I echo Ilana’s statement. Crazy you have to be doing so much of this yourself.

  3. Flo Post author

    Thanks for the commiseration, Ilana and Doggie. And Yay, a Doggie phone call! That’ll be wonderful. Looking forward to it, girl.

  4. Jana

    Omg, YAY! SOMETHING! I’ve been thinking about you, too, Flo. Hang tough, sister and get this figured out. Man, no wonder senior citizens hate doctors so much, what fucking pain in the asses! Jeez Louise! Also, your toes look fine. ;) XOXO

  5. Aimee

    Flo, your privacy is to be respected (publishing to FB) but reading your blog… You still manage to make me grin even while writing about shitty news. And shitty docs. And I’m sorry you have to deal with those shitty docs. When they can’t look at and listen to the live human in front of them it’s time for them to hang up the white coat. Damn right on the second opinion.

    And I love the red polish. ;)

  6. Miranda

    Just echoing comments above, really…they say what I’m thinking. I’m always glad to see an update!!

  7. Nick

    Well, since you are cutting off the FB line I had to subscribe! I was just thinking about you the other day and wondering when we were going to get an update. I’m glad you have opted for a 2nd opinion and like Amiee stated you sure have a great delivery for less than stellar news. Keep on pushing and fighting for answers, you deserve them!

    And FWIW I am going to throw my copy of “Walk Your Way Slim” out the door!

    Big hugs from the land of orange :)

  8. Flo Post author

    Jana, Aimee, Miranda, Nick, thank you darlings, both for the fabulously supportive words and for making me laugh.

  9. Sherry

    Flo, please know that I took a long pause before writing this… and even did a quick search on your blog to see if it’s something that had been thought of before. The Raynaud’s (which I know is new), the itching… have any of your physicians considered lupus? Stay strong, Flo. Continue to advocate for yourself. There IS an answer out there!

    1. Flo Post author

      Hi Sherry, it’s definitely not lupus, only a couple symptoms overlap (believe me, I’ve looked over every neuro disease and syndrome I could find). It’s MS. I’m positive. All the symptoms fall under that umbrella, every. single. one. It’s not like I’m trying to fit any squares into round holes.

      An important detail that I should have posted is that, for some reason unbeknownst to me, this doctor didn’t order a cervical spine MRI. This is a huge hole in the diagnostic process because lesions are far more common in the C-spine than the thoracic so I’m really not sure what he was thinking. Also, thoracic lesions can be too small for an MRI to pick up which doesn’t help the diagnosis but is something to keep in mind. So I’m not dissuaded at all, I’m sure it’s MS. Btw, I was trying not to say that out loud on the interwebs (my close friends know my stance) but there you have it. :)

  10. reddogrunning

    Hey dude. I know exactly how you are feeling. My experience with the raynaeuds gift from this condition was what convinced me that neuros were not treating me at all correctly and that the God-Complex thing is indeed a thing; and a dangerous thing at that.

    I am fortunate that I had raynaeuds symptoms fleetingly in the first two winters (one was a HK winter which hardly counts but the other was a NZ doozy)I endured after MS was given to me as a probable explanation for my state. I now wrap up my extremities real toasty on cold days and keep moving as much as possible to prevent its malingerings.
    I am also of the opinion that neuros unwillingness to give clinical diagnosis for MS and or give comprehensive enough testing is simply that it is such a baffling condition. And that of course explains why a whole bunch of General Practioners will give an askew glance (I even got a duck face from one)when you mention that you may have MS to them.

    1. Flo Post author

      RedDog, isn’t it insane how we both have this going on? I can remember like it was yesterday you announcing on 3:20 that MS was likely in the picture for you. At the time I had no idea what MS was but I knew it was really bad. I guess I’d already had my initial crap happen by then so it was already brewing, though I’d never have guessed I’d be sharing your outcome. And now we’re in this parallel universe with Raynaud’s in your story, too! So freaky.

      As much as I don’t want either of us to have this crap, I’m so glad I know you and that you bring such understanding of the situation, it’s an immense comfort. Thanks for existing, dear one. :)

      P.S. I agree with everything you say about the diagnosis difficulty. It’s such standard issue for MS to take years to diagnose, that none of this is any real surprise at all. We’re in huge company.

  11. Ewen

    I’m not eating Flo, so the fuggly feet fotos are bearable. Sounds like you’re getting somewhere in terms of reaching a definitive diagnosis. And that’s good! Not so good that you can’t do mild exercise without getting those terrible itches. Anyway, keep posting and all the best my far flung friend.

  12. fimmx

    Isn’t it crazy when you welcome a new symptom? What do I say, congrats? Hugs dear Flo, my continued best to you to find an outcome at the end of this journey. Ok, that sounds really hokey and corny and cliched, but I hope the sentiment gets across. Much strength to you GIM! May you be back in speedy motion soon.

  13. Luke

    “Thanks to all those months of weird tense running, I developed a manically high turnover rate – not a problem if I was racing a 5k from my front door but at easy paces, all it does is create a running stride that is short, choppy and energy zapping. I’ve been aware of this for months but no matter how many different cues I tried (slow arms, adjust foot placement, make a larger “wheel”, pretend I’m running aside a slower friend, etc) I found it impossible to stop the roadrunner legs – it’s hardwired to my brain.”

    You sound like you have OCD. I spent only a few minutes on your blog (a search about Ed Whitlock brought me here) and it’s fairly obvious most of you issues are of a psychosomatic nature. Sorry if that sounds mean. I just hope you can overcome this issue at some point since I can tell you LOVE running.

    1. Flo Post author

      Hilarious comment. Best laugh I’ve had in months. Thanks. Might want to actually read the blog before making such a ridiculous statement.

      But excuse me for not saying more, I have some pressing matters to attend to: flipping the lightswitch on and off 50 times before washing my hands 20 times and then going for a walk where I will do my best not to step on a crack. Because you know if that happens, I’m fucked.

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