just hoping

[dandb]

Hello! If anyone that has any thoughts on the following, I'd be glad to hear from you. For the last 3 months my symptoms have been as follows (in order):
-sleep myoclonus: at the beginning, any time I tried to go to sleep I was jerked awake by hands, legs, feet, etc. About a month ago, I started going to sleep without it - just when I wake up in the middle of the night and try to go back to sleep now, I have mild movement in shoulder, fingers on one hand, or a foot. But much milder than what it was. It got bad again a couple of days ago, but I noticed that stress seems to make it worse (I am terrified right now)
-paresthesia in legs, arms, hands, face (tingling, pain, pins and needles, burning sensation) - it was really bad for 4 days then it dissipated. At the same time, I had lower back pain on the right side that went into my leg with painful cramping - this has only happened a couple of times. Although the back pain is constant
-6 weeks ago I started having severe pain in the bladder area, as if I had an infection - it was worse during my period. It's every day now, but the pain is less severe - I just have a painful urgency sometimes during the day (mild pain now).
-About a month ago I started having muscle fasciculations all over - very mild, not all day, they happen in my legs, feet, back, stomach,  - they only last a second and are gone. Had C/T and MRI of brain: clear. Bloodwork: clear. Nerve conduction test: clear. I am being referred to a neurologist and will hopefully be seen soon. My GP felt it was an urgent appt. Am also having lower abdominal and pelvic ultrasound tomorrow. I know I have the hallmarks of ALS, but I'm just hoping I don't. I am 33 with two small girls, and hope to be around for awhile. Thank you!!

[wright40]

Hello again
No, just because you can see them doesn't make them ALS.  Fasciculations are fasciculations, whether they're benign or from some other disorder.  By the way, there are LOTS of disorders that present with fasciculations.  Good luck on the 24th and keep us posted.

[dandb]

Thank you so much for your reply! I wanted to wait until I had more info. before responding again. Went to Neurologist today (1st time) - passed the basic neuro exam: no brisk reflexes, no Babinski - she said everything looks good. I go for another NVC test with an EMG on Jan. 24 at her office - I'm praying that I pass that EMG. I had a question, I wonder if you've seen info on it - when I have these fasciculations, I am generally fully dressed, and they come and go so quick I don't have a chance to see if I can see them - but today I'm certain I saw one on the side of my foot - my fasciculations, as I described them to the neuro. are like "thumps" inside - I have a thump here, a thump there, and since I've been sick this week with a bad cold - they've gotten more intense (the cold may be a coincidence with the increase in intensity, I don't know). Do you know if the fact I can see them makes them solely ALS, or are they still in the running for the "benign" category? Thank you so much for your time and input!!!!

[ohioprof]

I'm reading your symptoms and I'm not really seeing "hallmark" ALS symptoms.  Number one, you're having sensory problems (tingling, burning and pain), which is not consistent with ALS; ALS is a motor neuron disease and not a sensory neuron disease, so all you will "feel" is weakness.  As far as your fasciculations: those can happen for any number of reasons, including stress and anxiety, which it appears you're having.  I think you need to look into exploring your spine and the possibility of a herniated disk.  Many times these are very slow in developing and go unnoticed until they one day present with symptoms.  That is one possibility.  Your neurologist will be able to point you in the right direction as to what area of your spine might be compromised.  There are many, many, many, many other possibilities as to what is causing your symptoms . . . but it doesn't sound like ALS at all.  Keep us all posted.

[dandb]

It's me - forgot to add: some mild tightening in my arms and legs has happened a couple of time with pain.