May I Ask How Each Of You Were Dx'ed?

[kmgy]

My father had difficulty buttoning a shirt in the summer of 2003. In the fall of 2003, he went to neurologist who did tests, thinking he might have had a stroke -which came back negative. He began slurring in the fall of 2003 after a few beers, and the slurring progressed to when he was tired, and then the slurring was consistent. He was also losing weight and having symptoms in his hand - they thought it was his heart and he had a stent put in January 2004. He continued to fall asleep and was very tired during the day. He passed out in april 2008, and was taken to hospital where he spent 3 days. no one had any idea, so he was discharged. saw cardiologist in may who thought it could be the lipitor, and took him off. symptoms continued and finally cardiologist referred him to different neurosurgeon who thought he had als based on hearing his speech prior to walking into examining room. we were referred to als specialist for additional tests and he was diagnosed in july 2004. By the time he was diagnosed, he was immediately placed on a bipap, and had lost 50 lbs due to swallowing/eating issues. His breathing fvc was in the60s. He passed away 5 months later in december 2004 right after xmas. he walked up until he passed without difficulty. It was the diaphragm/breathing that got him. Extremely fast progression. it was like a whirlwind with nobody knowing anything, and by the time they diagnosed him, it was too late for almost any intervention/peg etc. It is truly amazing that two different neurologists did not pick it up, and that he spent days in the hospital and they still could not figure it out. I infuriates me that he was not diagnosed sooner, so that he could have had the opportunity to learn more about the disease and have the opportunity to undergo procedures to extend his quality of life earlier. when we were finally referred to teh als clinic, the clinic staff was wonderful and assisted in every way.

 

[aherman]

Hi,

I am so terribly sorry for each of you.........I am going through some bad times now & am being bounced around (Haven't gotten a diagnosed yet) & Praying I wont.

Can I ask what symptoms & how you were diagnosed'ed if you wouldnt mind. How old you were & how long you've had it. It doesnt have to be so long. Just trying to put peices together for my own sanity, although I think Im losing it all together, as all I do now is cry. :-(

Thx & God Bless.............You all seem so strong

I am 56 years old and found out I have ALS on 3/11/08 this was after arm and leg trembling which started 5/07. My legs are the first thing that started to fail. Right now I am able to walk with the use of a cane or walker. Its not so bad, I think the bad part was not knowing why my legs were giving me so much trouble. I had to stop working and now just hang out. But, I won't let this stop me from doing what I want to do. Please speak to your Dr. and your local ALS chapter and they will help, aherman

 

[abbas child]

I was diagnosed 7/07 at age 54, with foot weakness beginning in the fall of 04, leading to foot drop, a sprained ankle both on the left side by the summer of '05. The one foot was my only problem until the spring of '07, when the other leg began to follow the same pattern... electrical studies in '05 showed only one leg affected, but in '07 a repeated study showed abnormalities in both legs, the abdomen and back--into the thoracic area. I meanwhile had several MRIs, dopler flow (swelling in feet, dark color in feet), CT scans, lots of blood work. Lyme disease was negative in blood, also in lumbar puncture. Now I have no balance, can transfer from the wheelchair with some struggle. Recently I realized I cannot cough well, and also cannot speak loudly.

Not knowing and waiting for the diagnosis was for me the hardest part. We all hope to find excuses that aren't serious to explain the early symptoms... but I was an exerciser and walked several hours per week before having to stop due to ALS. Gradually I learned that when something changes for the worse, it's likely the disease--then I go to a forum such as this one and try to learn more.

 

[mysticunicorn66]

An Update:

My father-in-law lost his battle with ALS in Dec. 2008. :-(
He got to the point that he was not able to get around too much w/o it getting him really winded. Coroner ran tests and said he died from a pulmonary embolism. She said that he probably had a deep clot in the leg from not being up and walking much and that it broke free and his death was quick.

 

[abbas child]

You and your family have my sympathy. It's good his death was quick, but I'm sorry for your loss.

 

[Judith]

I am very sorry to hear you lost your father-in-law.

 

[KC2U2]

Hi,

I am a recently diagnosed (9/28/10) 50 year old male. As I thought backwards, the first sign I remember was at the end of last year I was closing my business and packing up a moving truck when I noticed weakness in my right shoulder, but assumed I hurt it lifting heavy boxes. Saw my GP in March who thought maybe rotator cuff tear, but I didn't have any pain. I tripped in March and wasn't able to finish doing the lawn, when I went to get off the couch that evening I needed help, again thought it was from fall. At the end of April went to Jazz Fest in New Orleans and couldn't walk the six blocks back to the car without stopping, my legs just kept tightening up. Still wasn't thinking anything wrong, but my family beginning to express concern. When friends at church commented that I looked slow and tired, and I began to notice the "twitches" so I went back to the GP. He referred me to the hospital where their first diagnosis was polymyosistis. After CT scan, MRI on shoulder, brain and neck, blood work and a EMG, the hospital was still unsure and referred me to the neurologist who is head of the ALS clinic here who made diagnosis.

I was just fitted for AFOs and can still walk although only short distances. No speech, swallowing or respitory issues but very weak right arm with limited movements. The disease can take a lot but not my faith or my sense of humor! Praying for good news for you!