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jsmida

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Nov 6, 2008
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Loved one DX
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Ontario
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London
HI mt mom is in the beginning of being tested for what is beleived to be ALS. Both her mom and her mom's brother passed away from ALS. What is weird is that my mom's case has started out with speech and slight slurring. I am wondering how many cases start out this way as oppsed to limb weakness and twitching. She has just finished taking an MRI, CAT scan and a pulmonary function test. We have yet to hear back about the results. What I would like to hear is someone with the same symptoms and what comes next?:-(
 
This is just the way my husband presented with symptoms. We first noticed slurred speech over a year and a half ago. Now he sounds very nasal and has had some hand weakness, fasiculations of the arms, and 2 abnormal EMG and NCV exams. We have just been diagnosed last week and are learning more with each day! Michelle
 
This may help, I have been reading through the forums about every day since I signed up. And I have found may useful things typing in the seach. You may find more answers this way too. My Mom was just diagnosed 5 months ago and hers started in the right leg. I have read others that have started at the mouth and face. I am sorry everything that you are going through. Good Luck and keep the faith!
Amy
 
Hi, guys, and welcome to the forum ... although like everybody, I'm really sorry you had to seek us out.

My symptoms started with speech slurring, too. This is called "bulbar onset," because it affects a certain part of the brain called the "bulb." Although most PALS (patients with ALS) start with weakness in the limbs, it is not uncommon for it to start with speech and swallowing.

It took about 9 months in my case for swallowing problems to develop after my speech started to slur. Now, at 2 1/2+ years, it is spreading into my hands and arms, although I'm still functioning (driving, keeping house, etc.)

Every case is different ... you will hear that over and over, and it's true. There are two things you can do to slow down the progression. One is a medication (very expensive) called Rilutek, which statistics show extends life by several months. The other is diet: Losing weight speeds up progression, and studies have shown that maintaining weight or even gaining, will extend the patient's life even more than Rilutek. So do everything you can to help get calories into your PALS.

As far as what happens next: The doctors will keep a very close eye on your PALS' breathing and swallowing, which can be affected.

Also, ALS affects the part of the brain that controls emotional reactions, so your PALS may burst into laughter or tears at strange times. Other emotional reactions from ALS are anger and frustration. There are ways to help with breathing and swallowing, and meds to help control the emotional outbursts.

I recommend that you get in touch with the ALS Association. They are a wonderful organization, and they'll assign you reps or case managers who can help guide you.

Take care of yourselves, too !
 
Hello Michelle and jsmida. Welcome to the forum although I am sorry you had to seek us out. Folks around here are very caring and we will help in any way we can. Feel free to ask about anything, and the tip to use the search feature is a good idea, too. Regards, Cindy
 
The problem in not knowing how fast it could progress, my mom wants to go to Florida as she and my dad do every year. I feel selfish asking her to stay here in Canada in case anything happens. My dad is in denial thinking the doctors can fix her. What do you do when test results come back with nothing to show? She has had an MRI, CAT scan and pulmonary function test.
 
Ismida ... has your mother had an EMG done? Who is it who believes that she has ALS? Is she seeing a neurologist? I don't think a diagnosed of ALS would ever be given without having an EMG. There are a lot of conditions that produce slurred speech besides ALS, including small strokes, etc.

If she is up to it, I don't know why she shouldn't take a trip to Florida.

Hopefully, you will get the results of these tests soon, and can have a talk with the doctor and find out what he/she is thinking.
 
Hasn't had EMG done yet. I think the neurologist is waiting to see what the first set of tests find. Our family thinks it is ALS because my grandma and my grandma's brother passed away from it. Since you are well versed in the medical world could I ask you what other conditions could cause the speech problems other than a mini stroke? The neurologist has pretty much ruled out the stroke.
 
Ismida, I am not at all well versed in the medical world ... have no medical training at all.

But a quick peek at Google shows that other causes of slurred speech include Parkinson's Disease, MS (that may be why the doctor ordered an MRI ... MS will show up on an MRI, I think), tumors, Bell's Palsy, and any other condition that produces facial weakness.

I think you're getting a little ahead of the game on this ... which is understandable, given your family history. But it sounds like your doctors are being very thorough. I hope they have an answer for you soon.

Take care.
 
Hi Ismida,

So sorry for the reasons that brought you to this forum. I know just how you feel. This summer my father was diagnosed with ALS and prior to that he began showing Bulbar symptoms back in February 08. Unlike your family, we had never known anyone who had ALS so we never ever even suspected it. I was confident my dad had a neurological disorder called Myasthenia Gravis which shares many of the same symptoms i.e. slurred speech, trouble swallowing etc. It is not a terminal illness so we were pretty blown away when we got the ALS diagnosed. My father has been working very hard in speech therapy and he is doing vitamin therapy and eating an all-organic diet that is very rich in calories. Before embarking on this nutritional plan, he had lost 7 pounds but has recently gained back 2 pounds since eating foods that are very high in essential fatty acids and calories. We're happy about that! I keep telling him I want to make him chubby and he laughs at that every time.

We also live in Canada and like you, my parents are snowbirds, they spend 3 1/2 months of every year in Florida. My father insists on going this year. He doesn't want to give up any of life's enjoyments to this disease. Right now, he has very slurred speech and a drop foot but he is quite mobile and feels that he still has a few games of golf left to play. I can't say I'm not worried about him being far away from his regular neurologist and the fantastic medical team that takes care of him here in Canada but on the other hand, I want my dad to experience everything he really wants for himself. Time is even more precious now. Also Canadian winters are hellish!:-o

I know it's difficult and you are probably fearing the worst but it's more important than ever for your whole family to live life to the fullest and live your dreams and hug and kiss your mom... a lot!
 
My mother's first inkling of this disease presented itself as a dropfoot. That was in July of 2007. By Nov of 2007, she was showing signs of speech problems. By March 2008, she had the diagnosed of ALS. By May 2008, she was having difficulty swallowing. Now in Nov 2008, she is getting all of her nourishment from Ensure through her feeding tube. I know she was able to eat part of an ice cream cone yesterday so, I think she is more afraid to eat than actually not being able to. I suspect she had a scary chocking spell and thus, now refuses to eat by mouth. She has lost about 30 lbs. She now weighs around 89. And finally, her voice is all but gone. I do so wish we had gotten the voice technology that is now available. She has been a tough old bird.....lol But she is now facing the consequences of refusing to accept her diagnosed early on and getting all the help that is available.
 
I know that her MRI is clear but can you tell me...with only having speech problems, would an EMG test show anything at this stage? Or is this test for people who have muscle weakness?
 
jsmida:

This is a good explanation of the EMG:



It shows how the EMG is done. If your mom has slurred speech, then her tongue (a huge muscle) has been affected.

My husband started our with slightly slurred speech and then we noticed fasciculations in his left forearm/hand.

She will probably have a Nerve Conduction Study done as well.

They are doing all these tests to rule everything else out. My husband had every kind of test you could think of done. All normal. That is when they decided to do the EMG and NCS. NCS was normal, EMG wasn't.

Let your Mom go to FLA and have a wonderful time!

Wish you luck!
 
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Hi Ismida ... if she is having speech problems, that is probably from tongue weakness, which involves muscles.

I had an EMG last May when the only weaknesses I was aware of were my speech and swallowing. The test showed denervation in three areas ... one my tongue (of course), and others elsewhere (shoulder and lumbar region). So the answer, I think, is yes ... an EMG can detect disease processes going on in the body, even if the patient hasn't felt any outward symptoms yet.
 
Thanks for the advice and I will keep you posted on test results which I hope come in over the next few days. My mom has informed me that if the test results come back normal she will be heading to Florida which I told her it should be her choice what she does. She said she will get the EMG done when she returns from Florida. So things will happen the way they were meant to and I have to remember to keep the faith.
 
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