MKM7
New member
- Joined
- Jan 31, 2013
- Messages
- 8
- Reason
- Learn about ALS
- Country
- US
- State
- PA
- City
- Small City
Hi everyone,
I have been lurking on the forums for a few months now. I wrote back in January and some of the wonderful members here replied. I wanted to write an update and get some advice. I fear that I may have ALS. If it is, it may be the strangest onset of all time and I certainly recognize that. I have tried to be as concise as possible below, and thank you very much for reading!
Jan 8th - miscarriage at ten wks. (my first pregnancy, not sure it's relevant, very sad) D and C procedure
Jan 15th - woke up with tingling feet (would come and go, but progressively worsened for two weeks)
Jan 29th - numerous bloods, ncv/emg, MRI with and without contrast - all normal
Feb 1st -8th - Loss of appetite, urinary urgency, sudden onset of fascics all over legs and a little bit elsewhere too, restless legs at night, pain in hands and feet, calf cramping, extreme fatigue (couldn't walk a block, had been running miles the week before), shooting pain in throat, arm numbness, even some nausea in morning
Feb. 8th and 18th - Saw local neuro and neuro at Hopkins - both felt it was a virus that would right itself in a few months- leg weakness was not clinical, although I limped at times (jhu neuro said 100 percent no ALS, although he also said that ALS typically presents with slurring and fascics you cant see) I know this is not true.
Feb - May:
Improvements - fatigue greatly improved (but not back to normal), urinary urgency gone, appetite better but not normal, went from walking a block to jogging a few (can't get much further than that), left leg still doesn't feel right (stiff calf and weak knee), very few foot tingles, felt like I was walking on bones of feet but that has improved
Same or worse - had arm numbness then hand numbness (both are gone), but now have hand swelling and stiffness that comes and goes throughout the day and is very bad at night, developed quivering/fascics in tongue and some jaw trembling (this is probably what scares me most), dent in thigh and lower calf on the left leg that doesn't feel as strong as right, right ankle feels a little weak and total body fascics continue (worse in calves and feet).
I was supposed to return to Hopkins this week, but they cancelled on me with no reschedule. GRRR! Have called back a few times with no return call. Since I still have no clinical weakness, my GP said try to return to athletic activities. He just checked out my left leg, not my tongue, and said to come back if my hand stiffness/swelling didn't improve. I was sort of waiting on the Hopkins Neuro this week to get some more answers. I have been taking Lexapro to stay calm, and trying to just work and live as best I can. It has been an emotionally exhausting few months. I would love any thoughts you all have. I recognize how strange all of this is, especially with things happening in all four limbs and bulbar region. I keep praying that things will just get better and I can focus on trying to create the family I've always wanted with my husband, but really fear that may never happen. Thanks for your help and reading this long message!
Take Care,
Missy
I have been lurking on the forums for a few months now. I wrote back in January and some of the wonderful members here replied. I wanted to write an update and get some advice. I fear that I may have ALS. If it is, it may be the strangest onset of all time and I certainly recognize that. I have tried to be as concise as possible below, and thank you very much for reading!
Jan 8th - miscarriage at ten wks. (my first pregnancy, not sure it's relevant, very sad) D and C procedure
Jan 15th - woke up with tingling feet (would come and go, but progressively worsened for two weeks)
Jan 29th - numerous bloods, ncv/emg, MRI with and without contrast - all normal
Feb 1st -8th - Loss of appetite, urinary urgency, sudden onset of fascics all over legs and a little bit elsewhere too, restless legs at night, pain in hands and feet, calf cramping, extreme fatigue (couldn't walk a block, had been running miles the week before), shooting pain in throat, arm numbness, even some nausea in morning
Feb. 8th and 18th - Saw local neuro and neuro at Hopkins - both felt it was a virus that would right itself in a few months- leg weakness was not clinical, although I limped at times (jhu neuro said 100 percent no ALS, although he also said that ALS typically presents with slurring and fascics you cant see) I know this is not true.
Feb - May:
Improvements - fatigue greatly improved (but not back to normal), urinary urgency gone, appetite better but not normal, went from walking a block to jogging a few (can't get much further than that), left leg still doesn't feel right (stiff calf and weak knee), very few foot tingles, felt like I was walking on bones of feet but that has improved
Same or worse - had arm numbness then hand numbness (both are gone), but now have hand swelling and stiffness that comes and goes throughout the day and is very bad at night, developed quivering/fascics in tongue and some jaw trembling (this is probably what scares me most), dent in thigh and lower calf on the left leg that doesn't feel as strong as right, right ankle feels a little weak and total body fascics continue (worse in calves and feet).
I was supposed to return to Hopkins this week, but they cancelled on me with no reschedule. GRRR! Have called back a few times with no return call. Since I still have no clinical weakness, my GP said try to return to athletic activities. He just checked out my left leg, not my tongue, and said to come back if my hand stiffness/swelling didn't improve. I was sort of waiting on the Hopkins Neuro this week to get some more answers. I have been taking Lexapro to stay calm, and trying to just work and live as best I can. It has been an emotionally exhausting few months. I would love any thoughts you all have. I recognize how strange all of this is, especially with things happening in all four limbs and bulbar region. I keep praying that things will just get better and I can focus on trying to create the family I've always wanted with my husband, but really fear that may never happen. Thanks for your help and reading this long message!
Take Care,
Missy