Marcelyn K. Harness
Forum Replies Created
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When my daughter was diagnosed with ALS (familial) I thought that stem cells may be have some merit. I am a retired hospital CEO. I have read every study of that therapy, talked to doctors that I knew that were using stem cell related therapies for pain management, etc. In summary, I have never seen a study that can point cconclusively to the success of stem cell treatment. I would be very leery of promises of success by anybody, especially those outside of the United States.
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I would suggest that you get a diagnosis from a reputable source. I would recommend you make an appointment at the ALS clinic at Johns Hopkins Hospital in Baltimore, Maryland in the U.S. I would recommend:
- Jeffrey Rothstein, M.D., Ph. D.
I know that it would be a difficult trip for you but I would do it immediately to see what disease or condition you are dealing with, confirm whether it is ALS. He was the one who diagnosed our beautiful child after other doctors just stumbled around and wasted time,
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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 memories, but those are hardly a substitute. This disease is so unfair and unforgiving. We miss them both.
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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 medical record. i would suggest that you gather whatever funds may be necessary and go see him. In our experience, you can get in to see him in a few weeks, not years. Sincerely, Marcie
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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 Johns Hopkins were very knowledgeable, and they get to the point quickly. I would highly recommend that you go there to consult him.