A Matter Of Confirmation

I cancelled the infectious disease appointment.  Turns out that for some time now, unbeknownst to me, I’ve been providing a daily positive diagnosis for Multiple Sclerosis right here in the comfort of my home.

You know those itchy rashes I mentioned?  I call them rashes though technically they’re not, no bumps or anything, just an itch that travels around certain parts of my body numerous times a day and appears without warning, lasting seconds or minutes before disappearing fast as it came.  Until now, I’ve had no idea what they’re about, but on Thursday I learned it has a name “paroxysmal itching” and is a known MS paresthesia symptom (like the more common pins & needles or numbness).

But here’s the twist…

I’m able to trigger an itch-fest myself by doing one thing: getting in the shower. I don’t have to soap up or anything,  just stand in hot water and boom, my hips will itch like crazy.  I even Googled it a few weeks ago to find out how the hell shower water can give me an allergic reaction but found nothing useful, so I chalked it up to “one of those strange things you live with when you get older”.

What a surprise then to find the explanation, without even looking for it, on the National MS Society site.

Uhthoff’s Phenomenon
Before MRIs, they used to diagnose MS with the “hot bath” test.  They’d immerse the patient in hot water and if neurological symptoms appeared, it meant you had MS.  This, thanks to Uhthoff’s Phenomenon which arises from heat intolerance, one of the most common symptoms of the disease.  It’s still a relevant diagnostic sign, not that anyone’s tossed into hot water these days, but I read of one doc who keeps a space heater in his office to observe/evaluate heat response, and patient reports of it can seal a diagnosis.

Unthoff and I have been shower buddies on and off for a while now – lately he’s with me for every damn shower, the perv. And as expected, upon lowering the water temp, the itch resolves.  So, yeah.

It would also explain something that has bugged the crap out of me for a long time.  Recall that in my short running life I’ve had 3 race collapses: one in 2008 and two in 2010.  The first two landed me in the ER for heat/dehydration, the 3rd didn’t require medical help but felt similar to the other two. The worst incident resulted in an overnight hospital stay. Let’s review that one: It was a 5k for which I took careful precautions by properly hydrating beforehand, wiped myself down with ice cubes before the start plus put some in my sports bra, and midway through the race poured a cup of water over my head.  Yet I managed to spend a night in the cardiac ward.

This never made sense to me. None of it did really, one collapse because you don’t drink enough, ok…but 3?!  What was I doing that was so different from other people?  A normal body slows down, it doesn’t shut down.  I can’t help but think that Uhthoff and his heat/exercise gremlins had a hand in it. Really looking forward to discussing it with the neurologist.

One last thing about this. When it first happened, it came to a head the first warm week of 2012 (a fact I always thought pertinent).  Anyway, my legs would go wonky, I’d freak out and go home and then, after sitting around for a short while, would test my legs by running through my apartment and note that my legs had returned to normal.  After the hospital stay, when I returned to my routine and the  “rigor-mortis” leg would intermittently appear in a run, a brief stop on the side of the path would “reset” my leg and I could resume as if it never happened.  This stopping has been my reset tool ever since.

Uhthoff’s Sign: neurological symptoms appear as body temperatures rise and recede as body temperature normalizes.  That’s been the case from the start.

No Mysteries Left!
my altered running gait
bouts of extraordinary running fatigue
the itches
the shower mystery
all my other odd neuro symptoms
the race collapses

Then there’s the progression. Just a year ago, it was still so ephemeral I could reason it away – a December 2012 running log entry says “felt a little oddness but maybe it’s just a quad niggle”.  In May I gave up the Garmin so I could take mid-run walks and stops without having to see them, or my deteriorating paces, in my running log.  By August, the fleeting “oddness” had become regular spasticity, affecting my ability to run comfortably on pavement and by the end of October, even grass didn’t work.

Add the fact that Late Onset MS is usually diagnosed around age 50 (I’m 52) and most commonly presents with motor disturbances…looks like we have the grand-prize entry in the “Flo’s Theories Of What’s Going On” game. I’m going to try to get an earlier neurologist appt. so hopefully will have an answer before Jan. 3rd.  In the meantime, the plan is to remain as neutral as possible and not dwell on it – no sense freaking out till I get a proper diagnosis.

Later, kids.


21 thoughts on “A Matter Of Confirmation

  1. Ilana

    Holy crap! Not that it’s a great thing to be diagnosed with, but man, it’s great that all the bits of diagnosis line up like that and give you a clear indication of what is up with you, after struggling to figure it out for so long. What really amazes me is that first race collapse was in 2008 – you’ve probably been dealing with minor bits of it ever since then, but your strength has let you power through up until now.

    Stay strong! Get taken care of! Yay for Figuring Shit Out!

    (and man, I would HATE to not be able to take super-hot showers, I love ’em.)

  2. Cyclin' Missy

    Flo, so sorry to hear that MS may be the diagnosis! But also so glad to hear that the pieces are fitting together and you may finally have an answer and a path to deal with it. My thoughts and prayers are with you, girl!

  3. cris

    Again, don’t know what to say except that there is undoubtedly comfort in an answer, even if the answer ain’t great.

    And MS does come in many forms, some of which are very treatable.

    Dunno if you read the article on letsrun over the weekend about the HS runner with MS – she ran 17:22 at footlocker south regionals this weekend…

    There is always hope. And it often starts with answers.

  4. Jennnnn

    Wow, Flo. What a mixed bag. As someone who searches tirelessly for the answers and often diagnoses myself before I even get into an appt., I say “well done and what a relief” but knowing the [possible] answer is also still just the beginning yet. ~sigh~ I’m glad you have some answers and I wish you peace and tranquility in being patient and tolerant of however this ends up. Best wishes to you, I follow your story always.


  5. Heidi

    Oh man, Flo. I do not know what to say….a diagnosis is good and I am happy you have answers, but…I would rather it not be something like this. (((hugs))))

    Heidi M.

  6. Runningwithscissors

    I’m thinking you’re right on track and should at least be in your residency as a MD by now. The pieces of the puzzle are fitting nice, real nice, together. Let’s hope you get a confirmation and an appt. real quick.

  7. Jackie

    Hi Flo- I’m not really sure what to say or what to think since it is a tough situation all around. I am sorry you are having to go through this. I hope you get an appointment soon so you don’t have to wonder about all your symptoms. I also hope it’s something that can be managed asap since you have been dealing with this for some time. Let us know if you need anything. We’re thinking about you and are hoping for the best. Your friends, J&L

  8. herb

    Flo, I know you want an answer, but itchy skin from hot water and/or heat can be the result of a lot of things, some benign and some very devastating. In this case, I’m hoping its benign and *not* MS.

  9. Sarah

    Hey, Flo ~ I thought the neurologists ruled out MS back when you had your hospital stay/s? Maybe I just remember MS crossing my mind at the time. :( Sorry. My sister-in-law Kim was diagnosed with MS about 12 years ago when she was 37. Back then, it was difficult for her to even get the diagnosis; one had to have like three episodes before the doctors would call it MS. That was frustrating. A few things I’ve gleaned from Kim’s experience:
    1) MS is a disease that is different for everyone. Symptoms and side-effects from medicines can vary by the day. 2) Heat and stress are bad for folks dealing with MS; air-conditioning is their friend. And 3)…MS is like a marathon. Flo, you are abundantly gifted with a curious, analytical mind…a powerful, persevering spirit, and a charming–and subversive! sense of humor that enables you to master any challenge. I truly hope you do not have MS. But if you do: GO FLO!!! xoxo

  10. Steve

    Well fuckityfuck! Sorry Flo, I obviously have nothing intelligent to say so that’s what you get from me. Again, I just wish I could reach out, give you a huge hug and tell you it’s going to be alright. Stay positive, I’ve always loved you’re attitude and you’ll overcome this.

  11. Flo Post author

    Thank you everyone, big hugs to all. And yes, Sarah, the doc did rule out MS because my MRI was clear (he said there have to be visible lesions on the MRI to attribute the symptoms to MS). That was an incorrect piece of information, 5% of people with MS present with clear MRIs. If not for him telling me that, I’d have probably figured this out a year ago, if not sooner.

    1. Sarah

      ahh…I thought you had said your MRI was clear. I hope you can find a doctor that is good at treating the 5% then. It took a long time–too long, for my sister-in-law to “get” a diagnosis. In Kim’s case, she either had to have 3 episodes…or 3 different MRIs showing 1 lesion, 2 lesions, then 3….It was and is very frustrating. It is great that you have kept such good track of your symptoms. Keep us posted and let me know if you ever want to connect with Kim. Love ya!!

      1. Flo Post author

        Just to be clear, I’m surely not in that 5% now – it’s been almost 2 years since then and I’m in a completely different place physically so a new set of MRIs should tell a better story. I think the lesion/episodes deal you’re talking about is called the McDonald Criteria. Good luck to Kim, may she see the slowest progress the world has to offer. :)

  12. AldonaStungys

    Ohh :( sucks!
    Stay strong, flo. I hope you’ll see neurologist soon.
    I had an optic neuritis 3 years ago and that could have been related to ms….
    Doct never found the cause so no answers for me. I lost part of my vision in one eye.
    I heard about gaps diet. Look into…
    Hugs to you.

  13. Allin

    Flo Darlin’…Sending you lotsa chainsaw chanting. There’s a lot u can do nutritionally, spiritually, mentally and physically. Pace yourself and never push cuz u’ll pay the next day. REMEMBER: Body and mind are one. U’ve gotta be like a detective and find out all u can on MS. Research the hell outta this and become an expert. Fill ur life w/positivity. Take it from me, after near 30 yrs. of living w/RA, my life is better now than ever. Happier and healthier. No drugs either. 3.4 years in remission now!
    Always in love and light. BTW – U don’t look a day over 22!!!

  14. Jim E

    Hi Flo. I don’t have any medical observations to make, but hang in there. You’ve been dealing with this for a while now and I can’t imagine how difficult it’s been. Hugs, and here’s hoping for a resolution soon.

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