I need help?

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New member
Jan 15, 2009
Loved one DX
My Mother BLPhill has ALS she has something going on with her tonite where she cant feel anything from her left knee down and the left side of her face is numb. She is very scared... I called her als doctor and he seems to think she should go to the emergency room because it sounds like a stroke. She is certain that it is not that i dont know what to do or think does anybody know what may be going on?
I don't know, but I think you should follow the dr.'s advice and get her checked out.
I will be praying for you.
I told her she needed to go but she refuses
Call the ambulance and in likelihood they will convince her to go, but minimally they can assess her. Good luck.
How is your mom? Please let us know.
Thanks for asking Rose. This a.m she says her leg is still numb but not as bad as lastnight. she seems to be doing a bit better but is still worried that she doesn't know what is going on. She has an appointment foe an EMG test tomarrow and she thinks they may be able to tell her more then.
Hi Rose

Thank you for asking about me. I had a bad night, it's better this morning but not alot. When my daughter called the Dr, he said it sounded more like stroke symptoms than ALS symptoms. Well, I know my body better then anybody else and I now they are ALS symptoms.

I don't like to scare my kids like that,but I'm scared too. When I first started going to Drs about my symptoms, I was told by numerous Drs everything from there was nothing wrong with me, to I needed a total knee replacement, that I had MS, arthritis, and of course don't forget the Dr who said I was drunk. I went to a neurologist who told me my slurred speech and abnormal gait were two seperate issues.

I decided I needed to start to reasearch my own symptoms, since these incomptent Drs couldn't figure it out. After months of research(with increasing sympyoms) I zeroed in on Als. I had every symptom to fit the diease, but the one that really gave it away for me was the emotional liability. Laughing and crying at innapproaite times.

I decided on a new pcp and made an appt. I went in there and told him what I had. After testing he was inclined to agree with me.

This started the ball rolling. He then reffered me to the university of washington in Seattle. After much testing to rule out other things, this neuromuscular specialist decided I had PLS.

Then my pcp wanted a second and third opinion. The second opinion neuromuscular specialist at als clinic virginia mason in seattle says Als. The third opinion at u of w in Seattle, says he is not sure. So ........ where does that leave me? My left leg and arm are thinner then the right. atrophy, lower motor neuron symptom. visible severe fascics, Lower motor neuron sign. I have positive Babinski, UMN. Brisk reflexes, UMN.

So I think I will go with virginia mason als clinic because I tend to agree with him. Although the third opinion is still underway. I go tomorrow to U of W for a full set of MRI and EMG/NCV.

The only medication I have been prescribed to date is muscle relaxer Flexarill and I had to beg pcp for those, which wasn't worth the trouble because they make cramping worse. I also have been prescribed cholesterol medication, and after doing my own research(again) I find out that ALS patients on average, live one year longer with high cholestrol, so I stopped that too.
I have had to fight every step of the way, on top of diagnosed myself. I had never heard of ALS or Lou Gehrig diease until I did the research of my symptoms. So why couldn't these highly trained Drs with medical degree's even come close?

I will not listen to any Dr unless I trust him, and I feel he is competent enough to make informed decisions regarding my healthcare. Thanks for letting me rattle on about why I do not trust Drs.
So...... The moral of the story is................If you think it has a bill and feathers, it probably does.

You can vent anytime you like. Please let us know how you appointment goes tommorow.

Yes, vent away! I was tempted to chuckle when I read that one doctor thought you were tipsy, except that it really isn't funny. I have the flexerile BTW, left over prescriptions for back problems, and have found it does not help with the muscle cramps, but it will make me sleepy, which could be a good thing, I haven't taken it in ages.

Please keep us posted about your appointment, (and I'm very glad you didn't have a stroke!) :)

I admire your intelligence and share your feelings regarding the medical community and the diverse opinions/diagnosis given for the same ailment. It is good to know that you are feeling better than you were yesterday.

Thanks to all, I wouldn't know what to do without you. I have alot of emotion going wild right now, as do my kids.

Go ahead and laugh Rose. I did.........right in his face, until I couldn't breath. The funniest thing about that is, I don't drink. Not even socially. So HONK! wrong answer. NEXT! I knew those bills were good for something!
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