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Marcelyn K. Harness replied to the topic Long Journey in the forum Diagnosis Information and General Questions 3 weeks ago
I am not sure where you live, but reading about patients’ struggles shows that there usually seems to be a delay in diagnosis of ALS. We finally got a definitive ALS diagnosis for our daughter from Dr. Jeffrey Rothstein, MD at Johns Hopkins in Baltimore. I am not “stumping” for or against any particular physicians, but the ALS clinic staff at…[Read more]
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Marcelyn K. Harness replied to the topic I would like to remember those in my family who have lost their battle with ALS in the forum In Loving Memory 3 weeks ago
I would also like to remember those in my family, Bill Harness, and Angela Harness Cline. They did nothing to deserve being afflicted with ALS. This disease came out of nowhere but apparently it is in our family and I hope and pray that the disease leaves other family members alone, as we have already lost so much. We have photos, we have…[Read more]
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Marcelyn K. Harness replied to the topic Young man with suspected bulbar ALS – what on earth should I do now? in the forum Diagnosis Information and General Questions 2 months, 3 weeks ago
I am sorry to hear your news. We lost our age 37 daughter in 2021. I do not understand the medical payment landscape in the UK, but we found Dr. Jeffrey Rothstein at Johns Hopkins ALS Clinic (Baltimore, Maryland) to be very competent in the area of ALS. He diagnosed our daughter after about a 10 minute physical exam, after reviewing her m…[Read more]
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Marcelyn K. Harness became a registered member 4 months, 2 weeks ago
Hello Marcelyn,
Welcome to the forum! I am one of the forum moderators and a person living with ALS: I was diagnosed in 2010.
If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. You can also search for past topics or discussions by typing…[Read more]
I would like to personally welcome you to the ALS forum. I’m Amanda, one of the co-moderators of the forum. ALS is a dreadful disease and we all want to understand it better, and find a cure!!
We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family h…[Read more]