Recent content by martini

For about a year prior to being diagnosed i reported internal tremors while laying down. It totally confused the neurologist. Later on they found fasciculations in my upper back during emg. I guess i wasn’t describing them accurately. Seems like the emg in bulbar onset is more of a challenge...

So often we read a story by someone with ALS who explains how early on they ; noticed a limp, twisted an ankle, felt like they sprained an ankle or something along that line. Also many of the medical websites say there is not a lot of pain reported in ALS. It seems like these two positions...

Just to finish my huntch and then i will shut up about it .. i don’t believe I have Raynaud’s even though their test results showed I do. See, i think there was limited blood flow to my extremities because my spasticity was constricting it. The ice water agrivated it. When i am not on...

The way they diagnosed raynauds was to submerge hands and feet in ice water for one minute than take the temperature at each fingertip and toe at five minute intervals. When the temperature after twenty minutes still had not returned to the pre-icewater reading they diagnosed raynaud’s. (Mine...

Have any of you been told you have Raynaud’s in addition to ALS? What helps? Raynaud’s makes your fingers and toes cold (white or blue)

At night when spasticity is at it's worst do you find as the baclofen is kicking in - That your toes begin to dorseflex up and down? Thats how i know the spasticity is getting better. On the one hand it is good - things are loosening up, but bad because the toes flex so violently that i swear...

yesterday I decided to hold off on eating any dinner to see if something in my diet was causing the spasticity to intensify in the evening. At 7pm the spasticity came as usual. So I decided it is not related to diet. There is a pattern/cycle that seems to be happening. Spasticity developes in...

TB- Yes, that is what they are "foot (arch) cramps". I always wonder if the cramps are a precursor to foot paralysis. Even though I hate the cramps, the alternative really sucks.

Does your spasticity get worse in the evening like around 6pm 7pm 8pm 9pm ? Is that when you take your largest dose of baclofen? Not looking for suggestions but rather to hear your experience with the time of the day and what does it feel like? -thanks Also does your arch of your foot twist so...

Early on did you ever decide you were not taking enough baclofen? What made you feel you needed to take more? Did you notice a particular part of the day which became a problem? (such as early evening or middle of the night?) What part of your body was causing the problems? -Thanks

Thanks igelb and tilie, I do have access to OT but I can still walk so I haven't used it yet. I think about it like a math formula; ALS + SP (spasticity) + AR (at rest) + MW (muscle weakness) + LBW (leaning & body weight) = PNrv (pinched nerve) = NSO (numb /sore/ odd) again I am not...

hi Tillie, thanks for your response. I should explain my sitting and laying with legs crossed at the ankle and also leaning torso to one side are spasticity. I don't want to sit like that but my body twist itself into these uncomfortable positions. Same thing while I sleep I wake up in...

thanks sherry -can your husband still walk? I meant to mention another area I get the numb/sore/odd feeling is my thumb and first three fingers

I am in my fifties and also in the early years (post diagnoses) and I am still able to walk short distances but something is happening several times a day and I want to ask if anyone else has this. I lean with my weight on a body part for too long and that body party gets compressed and I lose...

I showed this to my Neuro. He said this is Clonus.