Anyone know anything about ALS?

[Roxy's Run]

Has anyone been diagnosed with ALS? If so, what tests were performed to come to this conclusion? What were your symptoms? The doctors feel pretty sure that my SO has ALS and I had to break the news to him last night. Needless to say, it was not a "pretty" evening - lots of hugs and tears. I really would appreciate any and all information or direction of where I can go to. I am so tired and my head hurts. Thanks.

Linda

Roxy's Run Miniatures

 

[lyn_j]

[SIZE=18pt]My first question is why didnt the doctors break the news to him themselve? That is highly out of the ordinary for doctors to ask significant others even married couples to relay their partners diagnosis.... Amyotrophic Lateral Sclerosis ...ALS .... is a progressive disease where the muscles in the body become more fibrous.... including not just the long muscles but also the smooth muscles of the heart, lungs.... it is a degenerative disease and what eventually kills the person is the inability to expand the lungs anymore , The prognosis is poor, time till it takes over varies. He needs to talk to the doctors. I would not want to label someone with it without substantiated testing.[/SIZE]

Lyn

 

[Anne]

ALS is a tough one.

The people who we were close too as we started with minis, have had to deal with this diagnosis. He was diagnosised a couple of years ago. At first they managed pretty well, things have gotten more difficult the last year. We moved away but make sure we visit regularly. Noel was trimming feet on their horses, and helping whenever he could while we lived close. Building ramps, whatever was needed.

They are still fighting it the best they can and we try to stay in close touch.

Let your firends and family help, it's all they can do and will make the next few years just the tiniest bit easier for you guys.

 

[Roxy's Run]

Thanks Anne and Lynn. Lynn, I totally agree that the doctors should have told the actual patient the proposed diagnosis. The reason why the doctors told me and not Denny is because Denny has asked them to communicate all through me. He is not very knowledgable in medicine and does not understand a word they say so in the end I end up calling the doctors anyway to have them tell me what is going on. He gets so nervous and worked up around doctors, he just looses all ability to listen and comprehend what they are saying. Of course, he has signed forms permitting them to do this with me. If it wasn't for me in the first place, he would never have gone to the doctors to begin with. :new_shocked:

I am really concerned with what testing others have had done before being given this diagnosis. So far, we have done an EMG, MRI of the brain and C-spine, numerous blood tests including CBC, HIV, Hepititis, Diabetes, Lyme, ciphilis, etc. We have three more blood tests to do tomorrow but I don't know what they are for at the moment. We also did a TB test. EVERYTHING is coming back normal!!! In a sense, that is great that things are normal, but bad in the sense that the doctors are telling me that they have to rule everything out and since things are coming back normal all over, they are going towards ALS. Does this sound right? Thanks.

Linda

Roxy's Run Miniatures/Renditions

 

[Leeana]

Read the book 'TUESDAYS WITH MORRIE'.

Its a true book about a guy who has ALS. You would get allot out of it. There is also a movie you can watch that comes with the book. I would REALLY REALLY suggest this to you.

Please, read this book. It would help you so very much.

Leeana

 

[Anne]

Linda I sent you a private message,

Anne

 

[JO~*]

I lost my Father to ALS.

It's a hard road to travel.

When and if your doctor is sure of it being ALS I will be there for you if you need it.

 

[Amy]

John's best friend of over 50 years died form ALS. It is very debilitating. It took the doctors over 3 years to diagnose him & he lived for 3 years after that- he started out with small black-outs & progressed from there.

He had a motorized wheel chair & used to get around pretty good for a long period of time. It is a tough disease. I will be thinking of you daily. Let us know if you can get a second opinion at least.

Be very insistant that he be sent to a specialist etc.

I think you can go on line & do some research on the disease.