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I had respiratory onset – I suppose (read as guessing) it started in Feb 2017; it seemed like I had a lot more sinus issues and stuffy nose etc than I have ever had. I didn’t pay too much attention to it; I was busy taking care of my brother who had cancer and we were constantly (it seemed) at the hospital for treatments/tests/complications.
On Memorial Day (approx. May 28th) 2017, he died and I experienced my first instance of not being able to breathe AT ALL – my sister (a nurse) had to give me supplemental oxygen.
After that I experienced shortness of breath daily. I saw my primary care provider, went for chest x-rays and they could find nothing – chalk it up to my grieving and loss was what I was told.
By October of 2017, I occasionally (maybe once a week) slurred my words almost exclusively at the end of a long day. Again, we attributed it to lack of sleep associated with me still grieving.
By February 2018, the slurring was apparently noticeable during the day by co-workers and I started feeling stuffy almost constantly and have a rough lower sounding voice along with the “wheezing and shortness of breath”.
By June of 2018, I found a new primary care physician and saw him with my list of symptoms and start dates. The breathing issues were listed as “adult onset asthma” and I was given pills to take. They didn’t help much. In July 2018, I was referred to an ENT doctor and a neurologist.
The ENT could find no reason for the breathing issues or the constant “stuffy nose” and “nasally voice”.
The neurologist ran blood tests, MRIs, EMG and other tests – nothing was found that pointed to the possible problem, although I had symptoms that could be seen and heard.
I continued to see the neurologist every 6 weeks for almost 6 months.
I was sent to a speech therapist in Aug of 2018, she couldn’t help me – she had never seen anything like the combination of speech issues that I had.
In Sept. 2018, family convinced me that maybe I was suffering from PTSD over the still painful loss of my twin brother- so with no other avenues to pursue, I attended weekly counselling sessions for six months.
2019 brought different paths to explore, My husband began to experience some of the same symptoms that I had; stuffy nose, numbness in the arms. I had an infected tooth (possible link to speech- so I was told) we discovered mold in the house we were renting possibly the link to my symptoms???!!! We moved immediately and gave it a few months to improve- no such luck I was getting worse.
By Jan. 2020 my respiratory issues seemed to be slightly better but everything else was worse. I went outside of my insurance network and located a neurologist that I felt had the expertise to properly diagnose my medical condition.
On a side note, in December 2019, all my medical records were sent to the Mayo clinic, their doctors could not even guess as to what was wrong with me based on the tests that I had done during the previous 2 years. While we worked on getting approval for an appointment at Mayo, I found a neurologist outside my insurance network but still close to home that I felt confident in.
On March 9th 2020, I received the official ALS diagnosis. I am on Riluzole and Radicava, but the physical decline in the past six months has been frightening.
Had any of my previous doctors suspected ALS – I would have pursued treatment THREE YEARS earlier. But my testing didn’t show what they expected to see so ALS was crossed off of their list.
My current neurologist is on top of everything.
My ALS started with the respiratory then progressed to the bulbar onset was SO DRASTIC that the respiratory symptoms took a backseat and became more of a nuisance than the main focus. Finally the limbs were affected almost 2.5 years from the initial onset.
I’m sorry about the long post – but if it helps just one person to identify ALS earlier than I did – it can make a difference.