Old 10-13-2010, 01:03 PM #1 (permalink)
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Default When will the diagnosis be final?

My mother has been rapidly diagressing, but still has not been diagnosed with ALS. In the past year she has lost the use of her left arm and it is completely cripple, her right arm has started to become weak, she cannot hold her head up and she is in constant pain because of it, she has muscle spasms throughout her body and can't put on her shoes or open easy things around the kitchen. She has been diagnosed as having an mnd because her doc still isn't sure which one she has. She has had two rounds of ivi treatment to see if her body will respond, but nothing has improved. Over the past two months she has started having trouble swallowing and is choking frequently. We are all starting to get impatient because she shows all the signs of als but the doctor doesn't seem to be giving us much information. My mother lives in another state all by herself and is denial about what is happening to her. How much longer should the diagnosis take because my mother refuses to get help from any of us and she is unwilling to accept that she has als since the doctor hasn't confirmed it yet. I'm scared that she may pass away in her home before we can do anything to help and support her.
Thanks,
Sherri
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Old 10-13-2010, 03:12 PM #2 (permalink)
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Default Re: When will the diagnosis be final?

In the doctor's defense, he is probably looking for more definition.

It may be time for a second opinion with someone that specializes in ALS.

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Old 10-13-2010, 05:21 PM #3 (permalink)
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Default Re: When will the diagnosis be final?

I'd be worried. Obviously this doc hasn't seen many ALS patients. I'm no doctor but she sounds like she's in pretty bad shape. Is there anyone that can go help her ? She needs to go to an ALS Clinic to be evaluated and should have someone with her to hear and know what is going on. You have reason to be concerned even though she is in denial.

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Old 10-13-2010, 06:53 PM #4 (permalink)
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Default Re: When will the diagnosis be final?

Thanks for your response. I finally got a hold of her nuerologist. It seems that my mother has not been telling him all the symptoms she has, including the swallowing. He said he will be sending her to an ALS clinic now. Hopefully now we will get some answers. Now to pray that she cooperates with her doctors. We want to get her moved in with me or one of my sisters.
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Old 10-13-2010, 07:01 PM #5 (permalink)
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Default Re: When will the diagnosis be final?

Al are you a firefighter?
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Old 10-14-2010, 12:02 AM #6 (permalink)
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Default Re: When will the diagnosis be final?

He was but ALS put an end to that.
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Old 10-14-2010, 08:49 AM #7 (permalink)
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Default Re: When will the diagnosis be final?

I am glad your mom will finally get the care she needs. I pray that she can be with you soon.
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Old 10-15-2010, 01:12 PM #8 (permalink)
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Default Re: When will the diagnosis be final?

Yes I was a firefighter for almost 33 years. Twenty three years as a Captain. When I left there were 2 of us with ALS. That was out of approx. 400 firefighters. He's still alive as well. Slow progressors but I know of other guys that went quickly.

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Old 10-18-2010, 06:30 PM #9 (permalink)
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Default Re: When will the diagnosis be final?

I was wondering about firefighting because we lost our home and everything we owned to a house fire last year. Now we are dealing with my mother's health this year.
My mother has finally been referred to an ALS clinic. Her appointment is for next week and they said she will be there from 8am-3pm for an evaluation. She has already gone through many many tests with her regular neurologist over the past 8 months. Does anyone know what they typically do at an all day evaluation? I don't know if I should fly down to be with her or if we will still be in a waiting game to hear a diagnosis. Any advise?
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Old 10-19-2010, 01:35 PM #10 (permalink)
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Default Re: When will the diagnosis be final?

The first visit is a diagnostic one,they will examine and test her and ask lots of questions.
There also will be paperwork,hopefully it is an MDA/ALS supported clinic, then you should
expect help with equipment and possibly payment of clinic visits. Make sure her medical records
are available accompany her or are sent in advance. She should not go the ALS clinic alone.
good luck, Pat
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Old 10-19-2010, 02:54 PM #11 (permalink)
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Default Re: When will the diagnosis be final?

Thanks for the advise. I talked with a nurse at the ALS clinic today. She said it is a two-day evaluation. I guess the next day will include meeting with a nutritionist and physical therapist,etc. My oldest sister and I have decided to travel down to be there with my mother on those two days and maybe a little while after. We were with her in July and bought her some shoes that were easy to slip on and a soft collar to help hold her head up.
I guess I should bring a journal to write down everything I can. I just called her neurologist and they already sent all of her records to the clinic. My mother was able to get medicaid a few months ago with full coverage so that is a blessing. She is 62 years old and has always been so outgoing and energetic. She has aged so much in the past year and has hardly any muscle mass left. To me she looks like an 80 year old woman and she has always looked so young for her age. We are still trying to encourage my mother to move in with one of us, but we aren't sure how it's going to work out. We all have young children, work full time jobs and have houses with stairs that will pose an issue. We aren't sure what should happen to her home either. If she sells it or rents it out she could lose her medical benefits because of the income limits. I guess I'm just rattling, but it all is so overwhelming right now. Are there specific things we should ask when we are at the clinic?
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Old 10-19-2010, 03:20 PM #12 (permalink)
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Default Re: When will the diagnosis be final?

Which clinic ? Hopkins, GWU, Georgetown or...?

I am sorry about your mom.
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Old 10-19-2010, 06:25 PM #13 (permalink)
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Default Re: When will the diagnosis be final?

I live near DC, but my mother lives near Charlotte, NC so she will be going to the Carolinas Medical Center ALS Clinic.
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