Old 05-14-2013, 09:48 PM #1 (permalink)
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Default Hoping For the Best

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
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Old 05-14-2013, 10:11 PM #2 (permalink)
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Default Re: Hoping For the Best

Missy,

Sorry about your miscarriage. That's a big loss.

Nothing you describe, in my view, sounds like ALS. Tingling and numbness are NOT symptoms. Twitching can be due to many other conditions. Your body has been through a lot of stress in a few months.

Clearly you need a follow up to further investigate - but, if I were you, ALS would not be on my radar.

Good luck and I hope you get answers soon!
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Old 05-14-2013, 10:56 PM #3 (permalink)
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Default Re: Hoping For the Best

Missy,

I feel for you. Have had so many similar and weird symptoms myself since January. Granted, I'm no MD, but your symptoms seem to steer towards something other than ALS. My mother has had MS for the past 30 years and experiences the comings and goings of many things nuero with sensations and also motor neuro atrophy and twitching. Many on this forum with great knowledge of ALS will tell you that once you have lost something (speech, an arm, even finger movement), then it is gone. I wish you and your family the best. As one member told me, keep one foot in front of the other and keep trying to find answers. I know, easier said than done. Please take care.
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Old 05-16-2013, 01:16 PM #4 (permalink)
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Default Re: Hoping For the Best

Hi Elaine and phhope,
Elaine, thank you for your response. I have read many of your responses to people here and I thank you for your kindness to everyone! Phhope, it does sound like our symptoms are similar. I agree that the improvement in fatigue, appetite, etc. point away from ALS. I am just concerned now that my sensory symptoms have gone and left me with the twitching, tongue twitching, somewhat weak left leg, and stiffness in my hands. I'm sorry to be a bother, but can anyone tell me if they have felt like their hands were slightly swollen, stiff (worse in the morning!), and constantly had the blood rushing to them all the time like when you are holding them at your sides for too long? It is the strangest thing. Thanks for your patience and help!
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Old 05-16-2013, 02:03 PM #5 (permalink)
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Default Re: Hoping For the Best

Nope. Nothing sensory, less my sense of humour and common sense!

My gimpy hand swells, but it's because it dangles too long at my side doing nothing! It's atrophied, so maybe I need to try to exercise it a bit more than I do.

Truly, I believe you do not have ALS. I'm betting they find out you have something quite fixable. Please, try not to dwell on your symptoms. That can drive you bonkers.
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