Miss Vic
New member
- Joined
- Jan 31, 2021
- Messages
- 2
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- NV
- City
- Sparks
Thank you for allowing me to post here. I have been beside myself for 3 weeks and need help.
After a lifetime of constipation, my colon has shut down. After 4 weeks of trying literally everything to get things moving and calls to the GI doctors that go unreturned for days, I reached out to my GP. As I mentioned, I tried everything. Miralax, dulcolax. fiber, water, Linzesse, Amatiza, suppositories, enemas. Nothing like this has ever happened. GP set me up for an ultrasound, but when I get there tech says it's really of no use.
My next stop is urgent care, where I get a couple of x-rays. Doctor says he's never seen that much stool in the colon before and to get to the ER. At the ER, more x-rays, labs, then a ct. I have no bowel sounds but obstruction can't be ruled out. Labs discover very low levels of magnesium and potassium and I spend 3 hours having both dripped via IV. I am sent home with instructions to mix 14 caps of Miralax in water and drink in 15 minute intervals. Come back if no BM.
No BM next day and back in ER. More x-rays, more labs. While waiting in my ER room, the curtain is closed but the glass door is open and I can hear everything going on. My nurse is outside my door (I recognized her shoes) and another person (nurse?) comes over and asks how "her" bowel obstruction is doing. She says that I am still here, but no bowel obstruction. Doctor thinks it's ALS. As you can imagine, my world stopped. My heart stopped. It's my 57th birthday that day. They must realize that the door is open, and it's quickly closed. After more tests, I am released with a giant jug of Golitely and a referral to a new GI. I didn't mention what I had overheard.
The new GI I was referred to saw me a couple of days later. My BF was not allowed in the ER and I haven't told him what I heard. The doctor has seen everything and tells me he thinks it's a neurotransmitter disorder.
I am sorry for the lengthy story and thank you for bearing with me. I have had 3 weeks of total hell waiting for the battery of tests to begin. My BF(who I told a day after the GI appointment) is trying but can't give me more than "there, there it will be all right".
Has anyone out there ever had ALS present like this? I have other weird things going on like some neck pain and tiredness but have chalked all of that up to being a stressed out middle aged woman.
Any insight would be much appreciated.
Vicki
After a lifetime of constipation, my colon has shut down. After 4 weeks of trying literally everything to get things moving and calls to the GI doctors that go unreturned for days, I reached out to my GP. As I mentioned, I tried everything. Miralax, dulcolax. fiber, water, Linzesse, Amatiza, suppositories, enemas. Nothing like this has ever happened. GP set me up for an ultrasound, but when I get there tech says it's really of no use.
My next stop is urgent care, where I get a couple of x-rays. Doctor says he's never seen that much stool in the colon before and to get to the ER. At the ER, more x-rays, labs, then a ct. I have no bowel sounds but obstruction can't be ruled out. Labs discover very low levels of magnesium and potassium and I spend 3 hours having both dripped via IV. I am sent home with instructions to mix 14 caps of Miralax in water and drink in 15 minute intervals. Come back if no BM.
No BM next day and back in ER. More x-rays, more labs. While waiting in my ER room, the curtain is closed but the glass door is open and I can hear everything going on. My nurse is outside my door (I recognized her shoes) and another person (nurse?) comes over and asks how "her" bowel obstruction is doing. She says that I am still here, but no bowel obstruction. Doctor thinks it's ALS. As you can imagine, my world stopped. My heart stopped. It's my 57th birthday that day. They must realize that the door is open, and it's quickly closed. After more tests, I am released with a giant jug of Golitely and a referral to a new GI. I didn't mention what I had overheard.
The new GI I was referred to saw me a couple of days later. My BF was not allowed in the ER and I haven't told him what I heard. The doctor has seen everything and tells me he thinks it's a neurotransmitter disorder.
I am sorry for the lengthy story and thank you for bearing with me. I have had 3 weeks of total hell waiting for the battery of tests to begin. My BF(who I told a day after the GI appointment) is trying but can't give me more than "there, there it will be all right".
Has anyone out there ever had ALS present like this? I have other weird things going on like some neck pain and tiredness but have chalked all of that up to being a stressed out middle aged woman.
Any insight would be much appreciated.
Vicki
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