“There’s always the floor?” my mum asked. With a brain fried like a piece of KFC garbage, thinking intelligently seemed hard to do. “Of course there is always a floor, go figure!” But I was getting desperate, water streaming from me and no place to cool down. Aside from the floor, that is.
Being away from my tiny, green, luscious and cool island of Ireland, I am indeed desperate for a walk-through freezer, a dip in a Scandinavian frozen lake or a butler who makes the best mint or lemon ice cream to lower my body temperatures.
So there I went, in my bikini, through my knees, on my back on my mum’s cold living room floor. It welcomed me as never before… and it helped! Uhthoff’s gone for a short while at least!
Why nag about something every single person experiences when the weather is just unbearably hot? Well, that’s the thing with MS, you see. Healthy people have proper nerves in their central nervous system. People with MS experience Uhthoff’s symptoms and have their nerves and the messages that travel through them somewhat broken into pieces, meaning that anything hot is well… just too hot to handle.
If I’m right, this is the 3rd or 4th blog post about feeling too warm and experiencing once-dormant multiple sclerosis symptoms. If Wilhelm Uhthoff was alive today, and MS research was still a thing very much in its infancy stages, he would not have minded putting me in a hot bath to find out if I had worsening demyelinating, neurological conditions like MS.
Hot baths, why if you are that sensitive to heat? Had to when my bones felt like ice picks that needed hot water to warm up. After been in one for some time, I needed to lie down for an hour to reduce eye pain, tremors and extraordinary weakness. Walking from shower to bed at a pace of a snail on Valium was my way of doing a Usain Bolt-like rush to the finishing line. The only good thing about Uhthoff’s? The symptoms are reversible, which means that after a while they disappear again. Until the next heatwave arrives.
Not only hot baths and warm temperatures can cause new acute symptoms or older ones to appear, and infection and fever; stress – psychological or physical; exercise or having a hot drink or dinner, have also been listed as probable triggers for Uhthoff’s symptoms.
And don’t I know it! I would utterly enjoy summer if it was not for Uhthoff’s phenomena. Of course, I love being with my family, but I feel their holiday-feeling is somewhat tempered by my not being able to go out much to do something because of my Uhthoff’s.
I’ve learned to differentiate between an MS exacerbation and Uhthoff’s symptoms because the latter is not a form of relapse. Whereas Uhthoff’s is a thermoregulatory phenomenon, MS relapses depend on immune dysregulation.
After returning from a short walk this morning, the floor seemed quite inviting once again. Instead of trying out the old ‘lots of pacing, water and ice packs, hunting for shade, rest, dressing accordingly, eating cool food and generally trying to stay inside’ routine, I just embraced the coolness of the floor. Somehow cooling vests and water exercise classes are starting to look darn exciting if I could have some.
And here I am so. Sitting on the cold floor again, typing away. Outside temperatures that managed to throw a spanner in the works of my badly needed RRS (rest, relaxation and sleep) the last few days have now plummeted to a cosy 21°C from 30°C yesterday. Still much to warm for me, but at least I am not having another heat induced meltdown.
Finally though, there it is… the long-awaited rain and wind. Hallelujah, my prayers have been heard!
Note: Research into Uhthoff’s symptoms showed that having optic neuritis and perhaps experiencing Uhthoff’s phenomenon doesn’t automatically mean that you have multiple sclerosis. Evidence does point however to Uhthoff’s as a strong predictor of later development of MS.
“In 1991, 81 patients with the first attack of isolated optic neuritis, 40 patients who also had Uhthoff’s symptom (Group 1) and 41 patients who didn’t (Group 2), were studied. The visual evoked potential testing from both groups did not differ significantly.
However, the MRI scans of patients in Group 1 showed significantly more abnormal results. Treatment with steroids did not affect Uhthoff’s phenomenon, which was also associated with a higher incidence of recurrent optic neuritis. Overall 43% of patients (35 out of 81) developed MS within 3.5 years, significantly more from Group 1.”
©Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2013. Unauthorised use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me with appropriate and specific direction to the original content.