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alswife?

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Nov 9, 2006
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PALS
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CA
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Rancho Cucamonga
My husband has been having symptoms since mid July- started with shortness of breath and feeling as though he had to constantly clear his throat but wouldn't be relieved of the feeling. Tried various acid reducer meds. per nurse prac. No help- actually made it worse. Sent to ENT- found everything to be normal. Aug. started suffering muscle cramping in hands- pain or discomfort has escalated to feet, legs, arms, and now neck. My husband has a little weight in his belly- but has lost muscle mass in arms, legs, hands, neck, buttocks, and chest. He has recently experienced a dead sensation in his left foot. Also I noticed his shoes when he is walking sound like he is a little boy wearing his father's shoes- they drag or sound too big! Does that make sense? He has had fasiculations in arms, calfs, and now in neck. Neck muscles are so sore- sometimes has difficulties holding up his head by end of day. He has suffered the last few days with an inability to project his voice- He is a teacher! Dr. did MRI- normal. Neuro did EMG-normal. Dr. tested urine for heavy metals, and tested blood for lots of things- Dr. says all are normal. Now what? Does this sound like als? Where should we go from here? He hasn't received a diagnosed yet, but almost feel like it is a matter of time. Should we ask to see a als specialist or als clinic? Anyone know of a good one? We live in southern Ca. Any and all advice would be greatly appreciated! Thanks, Billie:confused:
 

Al

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PALS
Diagnosis
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On
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NW of Toronto
Hi Billie. The sounds of the shoes flopping around could be caused by foot drop caused by atrophy in the shin muscles. It sounds awfully quick to be getting all these symptoms at once. It's taken me almost 4 years to get half of them and my tests aren't normal. I'd get a second opinion and from an ALS Clinic if possible. Someone on here will tell you of one. Check Leo Greene's posts I'm sure he has mentioned one or two. Take care. AL.
 

ChrissyWho

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Joined
Apr 24, 2006
Messages
21
Reason
Loved one DX
Diagnosis
03/2006
Country
US
State
California
City
Moreno Valley
Hi Billie,
I'm in Southern California as well. Loma Linda has an Als Clinic. Good luck to you!
 

musicsmiles

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Oct 6, 2006
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New York
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Holley
Hi, Billie

Good Luck Billie. We are here if you need us, remember that?
Take Care
Musicsmiles
 

notgoingtotell

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Joined
Sep 3, 2006
Messages
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Reason
PALS
Country
US
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California
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Los Angeles
ALS clinics in SoCal

There are ALS clinics at USC, UCLA, UC Irvine and UCSD. I think they are starting one at Cedars Sinai if it hasn't started yet. (I'm in LA if you can't tell.)

I think that all of these clinics address neuromuscular diseases in general, in addition to ALS. So, if your husband's symptoms aren't ALS, the doctors at these clinics should be able to help figure out what's going on.

ALSA in Agoura Hills can make a recommendation.
 

Jamiet

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Nov 27, 2006
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616
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Learn about ALS
Country
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Louisiana
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Carencro
billie,

Call your local MDA clinic and they could likley tell you where the closest (reputable) ALS clinic is. I would be persistent and very adament, call your neuro, tell him to get your husband in as soon as possible, and schedule the appointments, all you can, then cancel as needed, you'll make someone else's day by cancellations....LOL. Even if you have to go to the point i went to is basically walk into the ALS clinic and show the receptionist your husband and his symptoms, and your likely to see a neuro that day! It worked for me.

Remeber, this could be a hundred things, but, you should specifically mention your concern with a Neurologist of a possible Bulbar onset, esp. if his voice has become hard to potray and the first symptoms were in the neck / throat / breathing region, and based upon the speed of progression you state. Usually, bulbar involvement at first means a possible bulbar onset and is usually rapidly progressive, but again, everyone is different. Again, this could be something small, but it definitely needs the attention of a specalist.

We all wish you the best of luck, that you nor your husband become a member of this community, however, in the event you do, we are all with you and you are in our prayers.
 

trustinggod

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Oct 21, 2006
Messages
154
Reason
Lost a loved one
Country
US
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CA
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Lake Forest
Hi Billie,
I am so sorry for all that you and your husband are going through. I remember how frustrated and fearful I felt during the year that we waited for a final diagnosed.

I took my friend (PALS) to San Francisco a couple of times to see this Dr. at Forbes Norris ALS/MDA Research Center. They were the most kind and helpful group of medical professionals we delt with the entire 4 years. Dr. Robert Miller is the director of the research center and he personally examined Linda and spent as long as necessary to answer her questions and give her his opinion about what he saw. We never ran across another Doctor willing to step outside the protective barrier of his "professionalism" and tell us what to expect next if it was ALS. Dr. Miller had a way of making you feel like you were the most important and interesting patient he was seeing. The nurses and support staff at the center were equally kind and patient.
Linda participated in a drug study the center was doing. Too bad all the red tape they have to wade through makes it take years to complete.

The phone number for Forbes Norris ALS/MDA Research Center is 415-600-3604.
You can go to their web site and read about the "Ten Commandments for Optimal Motor Neuron Disease Patient Care" that governs the way they treat patients. Lots of other very informative information there also.

I am in so. Ca (Orange County) also. I can give you some names of great people at the ALS Association of Orange County. They provided some much needed support and have a "loan closet" to provide equipment to help with everyday living.

God Bless you.
Jeanne
 

janf

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Joined
Sep 23, 2006
Messages
132
Reason
PALS
Country
tift
State
ga
City
tifton
Don't give up! WE all know how frustrating this is.. Some drs. will pass the buck because they hate being the one to give the final diag. We are all here when you need us. Janf
 
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