Diagnosed ALS seems to move extremely fast...

[gotanygrapes?]

A relative of mine has been diagnosed with ALS 2 months ago. In this time she has gone from believing she had carpal tunnel to now being unable to stand or use her arms and hands very much.

After much research, this strikes me as odd because it seems so very fast. Is this likely? Typical?

TIA

 

[brooksea]

That's hard to say. You don't give enough info.

 

[gotanygrapes?]

Every week we are noticing that she is losing something else. One month ago she was walking and now their talking about getting her a hospital bed. She's in a wheelchair and unable to sit up in bed on her own. She keeps falling, but is not wanting very much help.

 

[brooksea]

What I meant was, carpal tunnel to being unable to stand is a big leap! What have symptoms been prior to all this? Also, how old is she?

You've got to give us more details if you know them.

 

[gotanygrapes?]

She is 52 years old. In October her hand was going numb and Drs. told her she had carpal tunnel and to wear a brace to help. December things were about the same. January she started noticing one of her legs was kinda dragging behind her, and they thought about doing physical therapy. February things were about the same she just noticed that she had dry mouth, and was getting tired very easy. March her hands were getting worse, but she was still able to do most things on her own (drive, get dressed, etc...)and they diagnosed her with ALS after many tests. April it was getting harder for her to stand for long periods of time . They made another appt. for a 2nd opinion.Her 2nd opinion confirmed it was ALS. Early May she was walking around her house using a walker and taking alot of naps. They had her in PT and OT twice a week. . It is getting harder for her every day. May has been the worst month so far. Now, she can't stand up for more than a minute and her hands barely work. She needs a good bit of help doing alot of things she could do on her own a month ago. Insurance stopped paying for PT and OT, but only a week ago. She's getting a electric wheelchair and their thinking about getting a hospital bed. She can't sit up on her own anymore and keeps falling. Their going for a third opinion in about 2 weeks. She's taking Riluzole and multi-vitamins. So far it hasn't affected her speech or swallowing. She just has dry mouth very bad. Two weeks ago, she did have a bladder infection. Things just seem to have gone really bad really quick. I know everyone progresses differently, but this just seems so quick. TIA

 

[gotanygrapes?]

I forgot to mention there's been alot of weight loss.

 

[joelc]

The progression does seem to be fast. But unfortunately it can happen that way, just not too common.

I pray she reaches a plateau and stabilizes for awhile. I am sorry to hear how quick things are happening!

 

[gotanygrapes?]

Thanks for the concern.I hope it slows down as well. I've read a lot about als, but, I haven't seen or heard anything about it moving that fast. Being around her you wouldn't think we would notice as much, but we see changes from week to week.

 

[mango]

Unfortunately my disease seems to be progressing quickly. The ALS specialist thought it would be slow, so there was some glimmer of hope, but every day I have a more difficult time with everything. This morning I rolled out of bed, my leg gave out, and I hit the floor with my forehead.

I'm very disappointed. I'm going to search the forum for negative stuff, like letting myself go without getting the machines and whatnot. I'm just curious.

 

[gotanygrapes?]

I'm sorry to hear that. I hope it slows down soon. Hang in there in keep positive. The same thing happened last week, she was trying to get out of bed on her own and fell out. Unfortunately, her cell phone was left on the bed when she fell, and no one was at home with her. We're doing everything we can to make her safe now. They're waiting to see what the next Dr. says to see what they need to do next.

 

[asantiago]

I'm very sorry about your relative's diagnosis. Unfortunately, it can progress very rapidly for some. My mom was diagnosed in November and only live for four months post diagnosis. Every week we saw a change in her. It is devastating to watch. Early February she made my husband a pancake for breakfast which was very difficult for her, but she did it. Four weeks later she passed away. Just two weeks before she died she was walking laps around the house trying to get some exercise, he legs were about the only thing that still worked.

My only advice is be persistent with the doctors and appointments to get her the help she needs in a timely manner. Hospice really was a blessing to us we wished we had called them sooner don't be afraid to use their services early. Antidepressants might help her not be so sleepy, they helped my mom's mood alot. For PT, the range of movement is what is important, you or a family memeber should be able to do that for her. I did mom's exercises twice a day, they were really important to prevent any cramping or pain.

May God bless and watch over your family!