justolemom
Member
- Joined
- May 1, 2017
- Messages
- 27
- Reason
- PALS
- Diagnosis
- 05/2017
- Country
- US
- State
- New York
- City
- Rockville Centre
I got my probable ALS diagnosis on May 24th, days before my husband and i would leave on an anniversary trip to California. We have shared this horrible news with some family and our kids. This is just overwhelming and I am so confused as to why we have to wait 6-8 weeks for a followup at the ALS clinic. IS this protocol at all hospitals? We just feel so alone, like I am just waiting to not be able to walk one day. We look online and well, that just scares the hell out of us. This forum has so many kind and helpful people, I did post earlier, before the diagnosis. Everyone seems so brave - I feel like a coward, Ijust want to hide in my bedroom with the covers over my head. Each day I want to be strong for my kids - but I don't feel strong. I am having a second opinion this Monday and pray for a miracle.
I just picked up my brace for drop foot and wound up pulling out my back wearing it at work. My muscles must be so tight because of compensation for my walking. This has caused much pain last night and today. Yesterday I thought this was an ALS thing and I would be walking in pain but from what I have read here pain and ALS dont go togethter so his must just be a strained/pulled muscle in my back.
Wondering how people heal when they have ALS. I have had sore muscles but am afraid this strain/pull will accelerate the muscle dying. Does that sound crazy?
Thank you for all the posts/information on this site. I have been able to find answers to some questions and just additional information. I apologize that this post is so all over the place - that is exaclety how I feel - sad, angry, hopeless and in disbelief. Like I want to go get tested for LYME and I will find out I actually have an illness with a CURE.
I just picked up my brace for drop foot and wound up pulling out my back wearing it at work. My muscles must be so tight because of compensation for my walking. This has caused much pain last night and today. Yesterday I thought this was an ALS thing and I would be walking in pain but from what I have read here pain and ALS dont go togethter so his must just be a strained/pulled muscle in my back.
Wondering how people heal when they have ALS. I have had sore muscles but am afraid this strain/pull will accelerate the muscle dying. Does that sound crazy?
Thank you for all the posts/information on this site. I have been able to find answers to some questions and just additional information. I apologize that this post is so all over the place - that is exaclety how I feel - sad, angry, hopeless and in disbelief. Like I want to go get tested for LYME and I will find out I actually have an illness with a CURE.