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nwafriend

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Hi,
My mom began having problems with her right hand just before Thanksgiving. The doctor found some disc issues in her neck, assumed this was the problem, and she began physical therapy for the problem. Between Thanksgiving and Christmas, her symptoms began to worsen. It began affecting her entire right arm and her legs. She fell three times during this time frame. She began to lose the ability to button, zip, brush her teeth, along with other simple tasks. Since New Years, she has quickly progressed and has fallen a few more times. She can hardly get out of her chair without help now. She scoots along without picking up her feet, and she can hardly feed herself with a fork or spoon without making a mess. The neurologist have done multiple MRIs, electrode testing, and lots of bloodwork. They have ruled out stroke, brain tumor, parkinsons, lyme disease, along with multiple other diseases. Her electrode testing showed that her muscles were misfiring. I can sit in the chair next to her and watch her thigh muscles move and jump around. She is experiencing this throughout her legs, arms, and shoulders. Her dad died of ALS in his 50's, and his sister (my mom's aunt) also died from ALS. She is 53 which is the same age he was when diagnosed. The neurologist told her he was 90% sure of a MND, but did not have it pinpointed. She is traveling today to the University of St. Louis Health and Medical Center to see a more specialized doctor and possibly have a muscle biopsy. The only things that keep us from thinking ALS is a few other symptoms she is suffering with. She has begun to fight bladder incontinence, and makes 10-15 trips a day to the bathroom to keep from having accidents. She is also losing her hair which may just be from the stress of the past few months. She is also concerned because of the rapid rate of degression. She told me yesterday that it took my grandfather 2 years to progress to the point she has got to in two months. Any information or advice concering her situation would be greatly appreciated.

nwafriend
 

brooksea

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nwafriend,

Very sorry to hear of your mother's condition. I do not have any advice to offer and hope that your mother has a treatable illness.

ALS is different for each individual. Some progress fast and some slow. There is no predicting what may happen and when.

I wish your mom the best of luck with her appointment today. Please let us know how she and your family is doing.
 

CindyM

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Hello. Jimmercat said exactly what is on my mind. I, too hope the appointment goes well. Cindy
 

mamaoftwo

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CJ knows much more about this than I do but even by the standards of fast progression we see here, this sounds unusually fast. I am not trying to give you false hope but it seems really odd to go from a problem with one hand in Nov to hardly being able to walk in early Jan. Thats a matter of weeks. I hope your mum gets a different diagnosis and they can find reason for her troubles other than ALS. Best of luck.
 

tooyoungforthis

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Jan 22, 2008
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Hi I just joined this and have never even been on a chat room but could not help after I read your message. I am in what sounds to be a very similar position. My mother was fine in September and then suddenly had trouble speaking and kept falling. She went through tons of tests prolonged by the fact that she was clostraphobic and had trouble getting and MRI. They then ruled out MS and I thought well maybe it is something easy. Then this past Tuesday she went to see a specialist who told her it was most likely ALS. I think her nuerologist knew but sent her to the specialist to tell her. I am at a loss on what at all to do. I want to go see her but do not want to just make her upset. She has always been very strong willed and refuses to talk about it or let us help with anything she cannot do herself even after considerable effort. I guess if they continue with this diagnosis she will hopefully change her mind. I'm just at a loss and don't want to lose my mother but also do not want to treat her like she is gone already. So in short, though long, just thought I would let you know though I do not know you I understand.
 

CindyM

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Hello TooYoung- welcome to the forum although I am sorry for the reason you have to be here. Jump in aqnytime with questions, also, you may find it interesting to search past threads on this site. There is a lot of information here but we will help at every step of the way. Cindy
 

nwafriend

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Mom was given ALS diagnosis yesterday

My mom did see the Dr. at St. Louis University. She brought all of her past test results and blood work results with her. The doctor told her it was ALS especially with the family history. The doctor did not even seem concerned about the fast progression just since New Years. She had a muscle biopsy this morning (very painful according to her) and a nerve conductivity test ( also painful). She said they even stuck needles in her neck area to make her tounge react. I think these test are just to confirm the doctor's opinion on the diagnosis.

Any help concerning her fast progression would be helpful. I guess you will be seeing me here a lot now.

nwafriend
 

Icanmanz

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Hi, nwa! Welcome to the forum. Sorry to hear about your mom. You have come to the right place. This forum is awesome. Feel free to ask, and you will get an answer before you know it. Will keep you and your mom in my prayers, and God bless.

Irma
 

northerngirl

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So Sorry nws

Hi nws . Welcome to the forum, I found when this all blew up for me, it totally messed me up with so many questions and fears.(That was my November, 13th 07 and it wasn't even a Friday)
This is a great place to be for support and searching questions. You will go thru a bunch of stuff. It is going to be a new journey. It is going to be really hard some-days. And most days you will be able to talk and laugh with your mom. Sorry if this is a little harsh but you might go thru a grieving process now, you will fight back tears, but if you do cry cry lots because your body will release hormones that will actually make you feel better, and in a little while you will feel better every day, and stronger. But these great people on the forum here will empower you! They have me. When your up to it check out mike at quadbliss here on the forum and check out his web page. Read some of his stuff. wow. Please, Please, Please keep in touch (you too tooyoungforthis!)
I am going to say goodnight and god bless you.
 
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