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Aug 8, 2010
Messages
28
Reason
Lost a loved one
Diagnosis
08/2010
Country
US
State
TN
City
Henderson
My husband is 32 years old. He had a significant car accident in April that fractured a vertebrae in his back. After that we started noticing significant decrease in ability to use arms and hands, difficulty swallowing, slurred/nasaly speech, and falling all the time we attributed all this to the back injury. As it progressively has gotten worse we went to see the neuro surgeon that checks on his back and he ordered a MRI of his spine and an EMG. The MRI of spine is normal, but the EMG showed significant changes-enough that the neurologist that administered the test told my husband something was really bad wrong and he needed him to come back with his wife the next day. We returned the following day, the neurologist performed an exam and then told us that he believes he has ALS and the symptoms probably started a year ago they were just slow and subtle. For some reason they have now sped up. He has even lost about 35 pounds in 4 months. The neuro doc drew blood work and has ordered a brain MRI for next week to rule out anything else it could be. He gave a life expectancy of 2 years but also stated that he didn't have a crystal ball that told him when he might die from this. Should we trust this doctor-that I hope wouldn't have mentioned this at all if he wasn't pretty sure that is what he has-and/or go to a specialist? If we go to the ALS specialist the closest one is 2 hours away from us, can we go there occasionally but see the neurologist here more frequently? How long is the usual progression that you all have seen? Any recommendations appreciated. We have a 5 year old son and 2 year old daughter that have no idea what is going on but may not freak out too bad cause I am a nurse and they visit me at work and see things. we also didn't understand why the symptoms have gotten so much worse since the accident, the neurologist thinks its just a coincidence-any idea? thanks
 
Amber, it is worth coming to Memphis or Nashville to see an ALS specialist. I would highly recommend Dr. Bertorini at the Memphis MDA clinic. Here is the contact information:

Sherry D. Bramucci
Muscular Dystrophy Association
Health Care Services Coordinator
3149 Players Club Pkwy.
Memphis, TN 38125
901-748-3036
901-748-0485 (fax)
866-972-1543 (toll free)
[email protected]

Also, you should contact Beth Bumgartner at the ALS Association. Her number is (901)854-8661. Both of these ladies are great. They will get you all the information you need, as well as help you with equipment needs. If you need to talk to someone, please tell Beth that she is welcomed to give you my number. We (caregivers) in Memphis have really started leaning on each other for support. It has been such a great source of comfort and strength for me personally.

My heart goes out to you.
 
By all means get a second opinion. Diagnosing ALS is a lengthy process and made by elimination. Because of the serious nature of the disease I think a second opinion, preferably by a specialist if possible, is in your best interest.
 
Amber,

I would also highly recommend getting a second opinion. Take advantage of having that specialist a couple of hours away! We have a 3 hour drive ourselves, but have found the trip is well worth it on any of our visits. As far as progression, there is no defined rate. I'm sure most of the PALS here will tell you the same thing...ALS is pretty "individual" in that regard. The average life expectancy is 3-5 years, but there is a percenatge of folks out there that have continued well beyond those years.

You'll find there any MANY kind people here willing to help any questions they can...from patients and caregivers both. I find out new and useful information everyday from the people who live with and fight this disease everyday.
 
Oh Amber I am so sorry to hear of your hubby's difficulty. Yes please get an 2nd opinion, there is not a time limit on als everyone is different. I have 2.5 years with bulbar on set. Look into clinical trials, I am currently in the ceftriaxone trial and it seems to help.

Sending prayers your way!
Judy
 
Amber
So sorry you need to be here but I think you will find a group of caring folks here who are very knowledgable about ALS and always willing to help. I agree with everyone who has posted already, you need that second opion. We live in MO and my wife's diagnosed was from an ALS clinic here yet we drove to FL to the Mayo clinic to get a second opion. As far has how often you need to see the doctor, we go ever 2 months to a local ALS clinic in St. Louis, just 30 minutes away. I would also recommend that you get in touch with your local ALS Association or MD Association sooner then later. Our ALSA has been a world of help. Sending you the very best wishes.
 
Sorry about what has happened. As far as why the symptoms have got worse since the accident, with ALS things do not heal as well as they used to. I was given 2 years as well and it has been over 5 so don't listen to the doctors about time frames.

Welcome to the forum, we are here to help however, we can.
 
thank you all so much for your helpful information. We are hoping for the best and that it could be something else but the neurologist is so sure so we are just trying to go ahead and accept it and live each day for the day we have. He is in the angry stage at the moment but that will pass. again thanks for all the helpful advice.
 
can we go ahead and make the appt or should we wait til the official diagnosed on the 16th?
 
Amber,

I would go ahead and call Dr. Bertorini's office and ask when the next MDA/ALS clinic will be. There is a clinic every Wednesday, but once a month, they have a special clinic just for ALS. You might want to go ahead and make an appointment. There will be no charge for the services. They work with your insurance company, and that is all they charge you. Bertorini is fantastic. I think I would want him to look at your husband no matter what you hear on the 16th.
 
thanks so much; i just really dont know what to do. For the most part the nurse in me kicks in and goes on auto pilot but there will be a time when reality hits and it will probably be at the official diagnosed time.......
 
I agree with what everyone has said! Please go see the specialist in Memphis! At least you will know for sure! My husband was diagnosed about 4 yrs ago, but has had symptoms that we recognized for 5 yrs. We just did not know that there was a real problem 5 yrs ago.

Good luck to you and your family!
 
Prepare. You probably will know before the official diagnosis. Get ready for that to be the day it kicks in for your husband. That's what happened here. My husband did not believe it until they wrote it on a piece of paper. He was stunned. I had to suck it in and put my grief on hold for a few days.
 
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