Thanks for that. When this started I was running a fever as I also had a UTI going on. We have had some very hot weather for spring as well & if it's not hot it's humid. I'm also thinking because I am very fatigued and feeling weak that any walking at this stage is a huge effort & is possibly bringing my core temp up.
When both of my legs have that feeling that they are heavy but also feel sort of weak or jelly like I really just have to sit down. Is it possible that just over 7 weeks you could have developed so much weakness? When the orthotics people asked me to lift my leg with each step it just wasn't going to happen but the effort of me actually trying that was exhausting.
I can't see myself getting along with this AFO either because I put it on now & around my ankle joint is bruised and painful after only a short time wearing it. It's difficult because of my arthritis & I've had Achilles Tendonitis they said that it will be hard to tolerate because of the pain involved. I also don't wear enclosed shoes often so my feet are trying to get used to that as well. I will persist though & hopefully this will help me in the long run.
Thanks everyone it's always nice to not feel alone. I'm hoping today if I start off on the right foot (excuse the pun) I might have a better day all up :-)
Karry.
A concept near and dear to many of us with MS is Uhthoff's phenomenon. It basically means that neurologic symptoms, like those associated with MS, may worsen in hot, humid or hot & humid weather.
Kyle
Karry,
I go through periods of time where my legs feel hot, heavy, and uncoordinated. It has made me lose a lot of sleep the past few weeks. I spoke with my dr friend about it and thinks that heat and the unusual humidy this summer has aggravated my problems with my legs. I've been trying to stay cool and not over exert myself. Winter can't come soon enough!
Jennifer
Hi Karry -
my leg(s) don't stop completely, but I do lose control of them after my core temp rises too high. I can pick my feet up but can't control where they land. If my temp rises too high I start to lose any control of them.
I'm working with a PT on tring to exteend my times, using soe controlled time exercises. I.I walk 20 minutes, rest 5, walk 20 rest 5... On a day in day out basis, without raised core temp, my legs can sometimes feel leaden. I'm not sure the Ampyra I take helps, but it don't hurt neither :-)
Kyle
Hi JJ,
Thanks for the link that is very good reading & I am going to hold onto that in my documents. The Physio / PT said that it was interruption in the communication pathways between my brain & leg. She also said that the fatigue was making me lose function more quickly so to take it easy. I have not been able to go to PT for a few weeks now as I've been having my Rituximab & have had hospital appointments to attend. I am returning to PT the week after next & hopefully they can help me get moving more effectively.
The feeling of heavy / weak legs is probably from the fatigue I'm suffering. I did see the podiatrist yesterday who asked me to lift my leg every step I took with my AFO on which eventually caused so much weakness I couldn't move the leg. Maybe I shouldn't always do as someone tells me because any fool would have seen that coming. I only walked to the car but I thought it was a bit much to ask all at once. I do find that if I touch the leg it is more compliant which is probably because I can't feel it.
I do need to get onto some more exercises for this leg & rest it when I can also. I am stubborn or strong willed as you know so I will keep at it with the hope it all settles down soon.
Take Care,
Karry.
Hey Karry,
I'm sorry you've been having a tough time (hugs)...........in regards to the dysfunctional leg, hmmmm i'm wondering if you could be dealing with more, because of your pre-existing (none MS related) health issues eg bad hips, structural spinal issues etc etc from the juvenile arthritis degeneration.
To be honest, i don't think it would be in your best interest, to overlook your complex structural/spinal related history with what's happening, and considering the AFO is new and you've been doing physio lately, it may take some time to nut out the exact problem, and strengthen the muscles that are necessary to compensate the weakness etc, so your going to have to be good, lol which i know is asking a lot of you :D
This is a really great, easy to understand article on the different issues effecting walking in MS...
http://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Brochures/Brochure-Gait-or-Walking-Problems.pdf
Hugs.............JJ
PS. has your physio actually told you anything about what the issue is?