miss91
Active member
- Joined
- Jun 14, 2009
- Messages
- 61
- Reason
- Learn about ALS
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Hi Everyone!
I have been wanting to post on here for a long time and I am just going to do it! This post is intended for the individuals looking for an answer and who have NOT been diagnosed with ALS by a doctor.
Over 2 years ago I experienced some very disturbing symptoms that ultimately led me to this website. I had twitching, atrophy, over-flexibility of only ONE foot in addition to other symptoms. Some of you may remember me, or may read my blogs and see the desperation I felt over having no answer and assuming I had ALS. I convinced myself that I did have ALS, and that it was just a matter of time before the doctors found it. I was told by MANY people with first-hand knowledge on this site that I did NOT have ALS. However - my symptoms frightened me, and I made up my mind that it was ALS.
If you read my former blogs and posts, you will see how frightened I was. I made my 3 boys photo albums of our best memories with written-in side notes because I was sure I wouldn't be around to see them grow up. I was seen at Mayo Clinic, and the physicians noted that my foot was having issues, my feet and legs had issues and that my shoes no longer fit, but they could not find a reason. I remember a nurse being shocked at the difference between my two feet in flip flops at an appointment with a neurologist. I kept going back every 2-3 months until one day I realized that in spite of my changes, I was still walking, still doing everything I needed to do - and I decided not to go back. That was over a year ago. And I am still here, and I am fine.
My heart breaks for those with ALS. This post is ONLY written because I feel as though my earlier posts MUST BE updated in case they bring fear to anyone searching for answers. I DO NOT HAVE ALS. YES my body twitches horribly - it is embarrasing at times - and yes my foot has atrophy but I am able to RUN on it now - it is NOT ALS. It is SO important - if you are not diagnosed - to NOT let yourself become buried in fear without an actual cause. I put way too much energy into worrying and giving in to fear when in reality I wish I had done something to help others and would have stopped focusing on myself.
It took a LONG time for me to accept that my body has SOMETHING not right - but it's not ALS. I forced myself to go back to work, slowly at first, and I made myself go back to college and I finished my degree in May. No matter what - focus must be put into positive things and I wish I could go back in time and tell myself this! When I was looking through posts - I just wanted to find a few that would reassure me that YES you can have terrible twitching - even if you have never had it before - you CAN see a change in your body - you MIGHT feel weak - but it doesn't mean it's ALS! If it is not, you may recover. Our bodies have sooo many things that can happen, so many factors that even doctors can't pinpoint - that anything is possible. Even being ok.
That is the end of my rant! I want to thank everyone who encouraged me (or slapped me silly on here) back when all of this began. I am soo immersed in life now - working 45 hours a week, keeping busy in my 3 boys' lives - and I need that. Unfortunately this did take a toll on my marriage, as did other factors, and I am ending my almost 20 years with my husband. It is ok. I know everything will be all right eventually.
God bless you all! - Missy
I have been wanting to post on here for a long time and I am just going to do it! This post is intended for the individuals looking for an answer and who have NOT been diagnosed with ALS by a doctor.
Over 2 years ago I experienced some very disturbing symptoms that ultimately led me to this website. I had twitching, atrophy, over-flexibility of only ONE foot in addition to other symptoms. Some of you may remember me, or may read my blogs and see the desperation I felt over having no answer and assuming I had ALS. I convinced myself that I did have ALS, and that it was just a matter of time before the doctors found it. I was told by MANY people with first-hand knowledge on this site that I did NOT have ALS. However - my symptoms frightened me, and I made up my mind that it was ALS.
If you read my former blogs and posts, you will see how frightened I was. I made my 3 boys photo albums of our best memories with written-in side notes because I was sure I wouldn't be around to see them grow up. I was seen at Mayo Clinic, and the physicians noted that my foot was having issues, my feet and legs had issues and that my shoes no longer fit, but they could not find a reason. I remember a nurse being shocked at the difference between my two feet in flip flops at an appointment with a neurologist. I kept going back every 2-3 months until one day I realized that in spite of my changes, I was still walking, still doing everything I needed to do - and I decided not to go back. That was over a year ago. And I am still here, and I am fine.
My heart breaks for those with ALS. This post is ONLY written because I feel as though my earlier posts MUST BE updated in case they bring fear to anyone searching for answers. I DO NOT HAVE ALS. YES my body twitches horribly - it is embarrasing at times - and yes my foot has atrophy but I am able to RUN on it now - it is NOT ALS. It is SO important - if you are not diagnosed - to NOT let yourself become buried in fear without an actual cause. I put way too much energy into worrying and giving in to fear when in reality I wish I had done something to help others and would have stopped focusing on myself.
It took a LONG time for me to accept that my body has SOMETHING not right - but it's not ALS. I forced myself to go back to work, slowly at first, and I made myself go back to college and I finished my degree in May. No matter what - focus must be put into positive things and I wish I could go back in time and tell myself this! When I was looking through posts - I just wanted to find a few that would reassure me that YES you can have terrible twitching - even if you have never had it before - you CAN see a change in your body - you MIGHT feel weak - but it doesn't mean it's ALS! If it is not, you may recover. Our bodies have sooo many things that can happen, so many factors that even doctors can't pinpoint - that anything is possible. Even being ok.
That is the end of my rant! I want to thank everyone who encouraged me (or slapped me silly on here) back when all of this began. I am soo immersed in life now - working 45 hours a week, keeping busy in my 3 boys' lives - and I need that. Unfortunately this did take a toll on my marriage, as did other factors, and I am ending my almost 20 years with my husband. It is ok. I know everything will be all right eventually.
God bless you all! - Missy
