cold

  1. J

    Foot Straps?

    I am having a difficult time keeping my feet on my Permobile footrest. my feet get cold and swell a bit during the day so i use the leg lift and recline to help with that, something they recommended to do every hour for 3 minutes. My problem comes when i go back to regular sitting position. my...
  2. S

    A couple questions, if you have time.

    Let me begin by saying; I do appreciate anyone who is taking the time to read this. I also realize you are not doctors but individuals w/ unique experiences through this evil disease. I respect each of you and all you have to say. 1/ When you started having symptoms•concerns who did you speak...
  3. K

    Is this the end?

    Waking with headaches several times at night and during the day. RT says AVAP can not be tuned more. Was cold all the time now having hot spells. Skin has become blotchy. Can't stay awake for 30 minutes ....
  4. D

    Trying to cope

    Still not sure how to get around to different forums or see what I posted. Was diagnosed in Feb 2018. Had to quit work in Jan. Not sure what's worse the mental part of this illness or the physical part. I know everyone's timeline and symptoms are different. I have weak left hand, right leg...
  5. M

    My PALS is getting a cold-help!

    My husband seems to be coming down with a cold and I have no idea what to do. This is the first illness he has gotten since diagnosis a year ago. He is on a feeding tube and a bipap at night (12-14 hours). Last time it was tested his breathing was around 50% (don't have raw numbers). He has a...
  6. R

    Leg and heel pain all night long

    My wife is on the noninvasive ventilator 12 hours at night and looks forward to that time — except that there are nights when she has leg pain most of the night. These pains are debilitating and don’t respond to Tylenol, Hylands Leg Cramp pills, heat, cold, massage. I reposition her 3-4 times...
  7. BlsdMama

    Glycine receptor antibody? Swallowing fluctuations?

    Anyone else been tested or positive? Curious. I'm positive and Mayo thought certainly a more rare variant of Stiff Person. However, thus far, have not responded to meds. My MND doc at our university thinks PLS. Mayo admitted this week that maybe MND is what it is afterall. But first we try...
  8. L

    strange sympthoms with ALS

    Hi everyone, I truly hope all the best to all of you and families. First sorry for my bad English I have the beginning symptoms of ALS about 6 months before , and diagnosed with ALS 1 months ago by EMG when I visited my neurologist (UMN and LMN he said). My scores ALSFRS-R is 46, only right...
  9. F

    Opinion?

    Hello, I have a question about my condition - I have quite a lot of fasciculations (thighs, calves, shoulders, hands, face, chest, back, little "feelable jolts" time to time on tongue, sometimes even inside of my ear - drum and sometimes I can see flickering in my eyes similar that I see...
  10. B

    Clean Clinical Exam.. Now Gait Abnormality

    Gait Abnormality.. Is this Foot Drop? I will keep this as short as possible out of respect for those reading. I have had fasciculations in right hand starting in December, went away for a while, then came back in January and moved to left hand, arch of right foot. Twitching spread everywhere...
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