suzannj
Distinguished member
- Joined
- Jul 5, 2008
- Messages
- 121
- Reason
- Learn about ALS
- Country
- US
- State
- NY
- City
- Buffalo
Hi Everyone,
I used that title because that was my original post’s title. I was asked to please come back and report on test results, because I guess some people fly-in and post concerns, but then do not come back and say what results they had.
For everyone like me, ABSOLUTELY TERRIFIED.....and 99.9% convinced that they have ALS, I'll give a quick review of what I was (am) experiencing that led me here in the first place:
- 37 years old; twitching (fasciculations) began ~5 months ago, localized at first and then body-wide almost all day and night; Cramping that started in my r.lower leg, but then also migrated to my feet and hands; Weakness / extreme fatigue in my r.lower leg; Intermittent myclonic-type jerks; PERCEIVED muscle atrophy in my r.lower leg....and of course obsessive reading about ALS, and utter and complete panic.
Please note that Wright and a few others said that my symptoms did not sound like ALS. I could not make myself believe that though, especially after the leg weakness set-in. I was crying multiple times a day everyday and felt like I was trapped in a surreal nightmare. My baby is not even two. My husband made me promise on our son's life that I would stop reading and/or posting on the Forums, and stop reading about ALS until I saw a neurologist, so I did as he asked.
Fast forward a bit, and to truncate a long story as much as possible: After a very thorough exam including a lot of blood tests, neurological exam, EMG & NCV, MRI of my brain, and another neuro exam, a local neurologist at one of our Buffalo ALS Clinics said that he is, "100% sure that (I) do not have ALS". In the end, he said he's not sure what is going on, but neurologically I am fine. He said if we have to put a label on this it would be Benign Fasciculation Syndrome (BFS) but that he sees people literally every single day who have symptoms similar to mine, or other "odd" seemingly neurological symptoms and are not "sick" with anything. He said this could continue, or stop as suddenly as it started. The body is a sometimes strange and mysterious thing.
I of course was elated on a level equal to when I found out I was pregnant, and yet there was a part of me that felt like I didn't / couldn't believe him after thinking for so long that I definitely was in the early stages of this horrific disease. And also a larger part of me that cried thinking of everyone who has received, and will receive, the opposite news that I did and cannot “wake-up” from their nightmare.
This brush with ALS has changed me, and I was shocked at all of the people in my life who did not know what ALS is, and what is does to people. I have been changed by this experience. I am now volunteering with ALS Guardian Angels and will continue to do so. My annual allottment of charity donations will from this day forward be sent for ALS research, and I will never, ever, forget how fortunate I am.
I have to leave these forums, as I find myself reading the posts again and feeling uneasy that my neurologist was wrong as I'm still twitching and cramping, albeit a lot less. The other odd thing? It could be just a huge coincidence, but my right lower leg – the one that was SO weak I began using my left foot to drive.....is now fine. It is utterly amazing how powerful the mind body connection really is.
I will pray every night for the rest of my life for God to grant medical researchers the wisdom to find a cure for ALS, and to give peace, hope, strength, courage and fortitude to every person fighting this battle.
Thanks everyone for being so incredibly supportive every time I posted. Take great care, and I hope this long-winded message helps someone else.
- Suzann
I used that title because that was my original post’s title. I was asked to please come back and report on test results, because I guess some people fly-in and post concerns, but then do not come back and say what results they had.
For everyone like me, ABSOLUTELY TERRIFIED.....and 99.9% convinced that they have ALS, I'll give a quick review of what I was (am) experiencing that led me here in the first place:
- 37 years old; twitching (fasciculations) began ~5 months ago, localized at first and then body-wide almost all day and night; Cramping that started in my r.lower leg, but then also migrated to my feet and hands; Weakness / extreme fatigue in my r.lower leg; Intermittent myclonic-type jerks; PERCEIVED muscle atrophy in my r.lower leg....and of course obsessive reading about ALS, and utter and complete panic.
Please note that Wright and a few others said that my symptoms did not sound like ALS. I could not make myself believe that though, especially after the leg weakness set-in. I was crying multiple times a day everyday and felt like I was trapped in a surreal nightmare. My baby is not even two. My husband made me promise on our son's life that I would stop reading and/or posting on the Forums, and stop reading about ALS until I saw a neurologist, so I did as he asked.
Fast forward a bit, and to truncate a long story as much as possible: After a very thorough exam including a lot of blood tests, neurological exam, EMG & NCV, MRI of my brain, and another neuro exam, a local neurologist at one of our Buffalo ALS Clinics said that he is, "100% sure that (I) do not have ALS". In the end, he said he's not sure what is going on, but neurologically I am fine. He said if we have to put a label on this it would be Benign Fasciculation Syndrome (BFS) but that he sees people literally every single day who have symptoms similar to mine, or other "odd" seemingly neurological symptoms and are not "sick" with anything. He said this could continue, or stop as suddenly as it started. The body is a sometimes strange and mysterious thing.
I of course was elated on a level equal to when I found out I was pregnant, and yet there was a part of me that felt like I didn't / couldn't believe him after thinking for so long that I definitely was in the early stages of this horrific disease. And also a larger part of me that cried thinking of everyone who has received, and will receive, the opposite news that I did and cannot “wake-up” from their nightmare.
This brush with ALS has changed me, and I was shocked at all of the people in my life who did not know what ALS is, and what is does to people. I have been changed by this experience. I am now volunteering with ALS Guardian Angels and will continue to do so. My annual allottment of charity donations will from this day forward be sent for ALS research, and I will never, ever, forget how fortunate I am.
I have to leave these forums, as I find myself reading the posts again and feeling uneasy that my neurologist was wrong as I'm still twitching and cramping, albeit a lot less. The other odd thing? It could be just a huge coincidence, but my right lower leg – the one that was SO weak I began using my left foot to drive.....is now fine. It is utterly amazing how powerful the mind body connection really is.
I will pray every night for the rest of my life for God to grant medical researchers the wisdom to find a cure for ALS, and to give peace, hope, strength, courage and fortitude to every person fighting this battle.
Thanks everyone for being so incredibly supportive every time I posted. Take great care, and I hope this long-winded message helps someone else.
- Suzann