Triggers for ALS?

[awillia7]

I am awaiting a diagnosis. I see an ALS specialist in September, and I will have my EMG repeated then. Neuro told me that in 6-12 months I would know either way. I have hyper-reflexes in my legs, spasticity in legs and jaw, atrophy of right calf and foot, a dirty EMG and what appears to be the first signs of atrophy in my left hand near my thumb. I take Tramodol, Zanaflex and Baclofen, and I just got a script for Valium when I get a spasm so bad that I end up on the ground.. Has anyone had what they believe to be a precipitating event? In 2007 I had gallbladder surgery, and they had to go in 5 more times after the surgery to get more stones out of the bile duct. Since them my digestion has slowed way down, and I have not felt well. In 2008 I noticed problems with plantar fasciitis and tendon pain in my elbows and behind my knees. In 2009 rheumy diagnosed this as complications from the Levaquin I had in 2007. I continued to feel icky, and in January I had trouble walking. I went to a neuro at the MDA clinic. He did a ton of blood tests, MRI of spine and head, and it all came out clean. No lesions and no sign of autoimmune stuff. (I have a history of autoimmune polymyositis which has been in remission since 2004.) He told me to come back in August, but by April I was walking like a penguin and in May I started using a cane or walker, and at work, because I work in a large facility, I borrowed an electric wheelchair to get around. I went back to see him in June and had an EMG. He said it could be ALS and referred me to their ALS specialist. When I put it all on paper, they seem unrelated, but could being run down from the gallbladder surgery and the history of polymyositis bring on ALS/PLS, or is it just my imagination? I'm still trying to come up with an alternative diagnosis for my symptoms.

 

[awillia7]

Oh yeah, I am a 46-year-old female, and my name is Annie. Are there very many of you with ALS that are women?

 

[Ms. Pie]

I'm a 59 year old woman. No, I have nothing that would explain my ALS. I have never had a child at any age. No major surgeries other than repairs to ligaments and such. No big accidents. No family history of it. I don't have anything I can attribute my diagnosis to.
Welcome to the board Awillia! I'm sorry you feel a need to be here. There are many caring and helpful people here.
Take care!

 

[kmendsley]

I am a 24 year old woman I think if you think about it maybe most people can attribute back to some big event that caused a later illness. I think maybe for myself it was when I had shingles when I was 19, then breast cancer at 21, and after that my body got way out of wack, and now here I am with ALS- diagnosed at age 23. Now persay, I obviously don't follow the Typical ALS age group but I am here nonetheless making the most of the time I have. I hope you feel welcome here as I have Awillia. We are all here for you.
Kell

 

[awillia7]

Thank you for your kind words. I've seen a lot of stories about people who were athletic and coordinated and their first symptoms were weakness and clumsiness. I've never been athletic, and have always been clumsy. My family has known me to be weak from the polymyositis, and they think this is the same, but my neuro said it is not and it appears to be sporadic ALS. It certainly doesn't feel the same. I've never had these symptoms before.

 

[kmendsley]

Family is hard to deal with and sometimes they can be the last to accept your diagnosis. (heck my parents STILL haven't accepted mine) I just wait patiently and hope they will someday come out of denial and understand. It can be hard though, so if you ever need to vent I will be your listening ear Anytime Annie. Take care.

 

[Bad Balance]

6 to 12 months seems like a long time to worry with this. A good Nuero should be able to determine a diagnosis much quicker than that.

I hope this resolves quickly for you.

- Jerry

 

[laurel]

Hi Annie. Reading through your post it strikes me that much of what you are describing could be the polymyositis. One does see muscle atrophy in polymyositis and on occasion brisk reflexes. Did your neurologist discuss that possibility with you? Perhaps you are no longer in remission. Best of luck.
Laurel

 

[awillia7]

Hi Laurel
My ck levels are normal, & he tested me for literally every autoimmune disease. I'm still hoping 4 some type of muscular dystrophy. The atrophy in my leg doesn't appear to be from disuse. Before this year I put in a lot of walking at work. I work in a large nursing home (128). As the social worker all the residents & their families are my clients.

 

[notme]

I would suggest seeing one of the docs listed on ALSA for a diagnosis. Not knowing does suck.