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Amyotrophic Lateral Sclerosis (ALS) Message Board


Amyotrophic Lateral Sclerosis (ALS) Board Index


[QUOTE=nosevlas]Deb, what have you learned about your diagnosis by now? I have had exactly the same scenario and have been trying to get a diagnosis for 6 months now. Thanks, Glee[/QUOTE]
Dear DEB,
I have recently read about the very very scarey symptoms you have been experiencing. I am hoping you have a diagnosis by now. I have just a little info to offer you; My 50 yr old male cousin was diagnosed long time ago (hes been gone 15 yrs. approx. first 6 months- said he felt super strong. Told each of us to put our hand on his deltoid muscle (arms-bilateral) and "feel the motor running?" Other than that symptom he was fine and had none of your other symptoms . At the end of that year we noticed "overlaughing (hyper-emotions). Of course he had major depression when he found out---- but was good (seemed strong) for quite a while (he went to Hawaii on vacation with us. He had a good time in spite of his diagnosis. He also danced at a family summer party (that was almost 2 yrs after initial dx). His third year -than advanced symptoms-mostly trouble swallowing....and that is what we remember about his als.
I am a senior citizen now and have been thru 2 bad scares in my own lifetime. Not als but ms (I was positive I had it when I was in my 30s. All symptoms just fit right in. Well-disappeared eventially. Worse part was really the sheer panic over a possible central nervous system disease. Most of the things in my life that I worried myself sick over-never came about.
Good chance your headed for better health-maybe by Spring? Hope with all my heart your doin better. Prayers with you,Dearie. SWEDIE
Please excuse me for just jumping in before I read all the posts. Ten years ago my Dad was losing weight and not looking well. We started going to all sorts of Drs., getting this test, and that, and there was no diagnosis. Near the end of his life, it appeared he had a stroke, and possibly subsequent ones. It was not until he passed away that he was diagnosed with ALS. I often wonder WHY? Why didn't someone catch it, or perhaps they did, as two days before his death he saw a Neurologist who put these pins in his legs and monitored a screen. He said it should be a flat line, but it was going crazy, up and down the screen. He did one leg, and my Dad sat there, just "out of it", and the Neur. said there was no need to continue. The only other things I can report as far as symptoms were that he had a lot of mucous, and difficulty bringing it up, felt like he was choking, and near the end, I could see the twitching, even as I held his hand while he passed. The nurses told me he was "gone", but I said "NO, I still feel his pulse and he's still twitching". They said that was normal for a few minutes, so I just held his hand until I felt no pulse and the twitching stopped.

At a time like that, you don't know what to do. In the ER, (after my Dad had fallen), the Dr. told me the best thing to do was let nature take it's course and to do no heroics. (He was 76)

Looking back, what did they miss? What did I miss? Could anything have been done?

I apologize if this is upsetting to anyone; this is the first message board I've found that actually dealth with ALS.

Does anyone know the latest treatment and outlook for the disease?

nightangel





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