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    • #16425
      Amanda
      Keymaster

      When you were first diagnoses what information did the doctors share with you?  Was the information clear? Did your doctor bring up research or clinical trials?  What questions do you wish you would have asked at that time?

    • #16428
      Jonathan L Maddock
      Participant

      HORRIFYING!

      The neurologist I went to took me 3 MONTHS to get my first appointment. Then ANOTHER 3 MONTHS to get on his schedule for an EMG.

      He was dead on in his prognosis after the EMG, but all he said was, “You have ALS. You’re a smart guy, I wish you luck:”. That and he said I’d need a second diagnosis from another source. That was the BEST advice he gave out that day. I had no idea what ALS was going to do to me. He didn’t offer me any ideas. I drove back to work, sat in the parking lot and Googled ALS. Dumbfounded. Didn’t sleep for A WEEK (or at least not well).

      A WEEK AND A DAY after the first diagnosis I was being seen at the Mass General Hospital Neurology Dept. I Even saw Dr. Merit Cudkowicz stop in the room I was in. I recognized her from the online information about MGH.

      https://www.massgeneral.org/doctors/16904/merit-cudkowicz

      I was in the right place. I should have gone there from day one. Their knowledge and empathy are unsurpassed. It’s a one-stop shop for PT, OT, Speech & Swallowing, clinical trials, and near immediate responses from the patient portal messaging center.

      Needless to say, my diagnosis was horrifying that first week. I’m doing great, now , 1 year and two months later.

    • #16432
      Susana Rave
      Participant

      My experience was very similar. I waited 4 weeks for the EMG appintment and a few minutes after the neurologist read the EMG findings he said that I have neuromuscular disease.  Not really knowing what this meant I asked do you mean ALS?  Unempathetically, he said yes.  He did not provide any information as to what this really meant and being overwhelmed (frankly shocked) by the news I began to weep.  My husband and I left the office and I quickly googled ALS and was horrified to learn how quickly it could progress.  I was so depressed thinking I only had 2-3 years left to live.  Six months later I sought a second opinion from Dr. Rosenfeld at Loma Linda Univ. Hospital.  He confirmed my diagnosis but qualified it by saying “it is a form of neuromuscular disease and a slow progressive type”.  He also said i don’t have the textbook ALS.  He delivered this diagnosis in an empathetic manner and he said I that if I wanted I could participate in clinical trials. I count my blessings that what I have is  the slow progressive type of neuromuscular disease.

      The team of specialists (PT, OT, Respiratory, etc.) are excellent and I will continue to drive 2 hrs to see Dr. Rosenfeld and attend Loma Linda’s clinic.

    • #16470
      Patricia
      Participant

      I was seeing a neurologist who could not diagnose my case and was referred to a large medical center in Texas.  It took three months to get an appointment with the neurologist there and it was a video visit. About three months later, I went for an EMG followed by another video visit.

      The doctor said, “You have ALS.  You need to get a port put in”.  She then proceeded to ask me who I live with. I told her that I live with my husband.  She asked, is he in good shape, to which I answered yes.  She then said good, because he’s going to have to take care of you.

      Needless to say, I was crushed just by hearing the word ALS! Her lack of empathy was totally inexcusable! I immediately decided to go for a second opinion.  My husband and I traveled to Minnesota to the Mayo Clinic in Rochester.  Even though the diagnosis was confirmed, the doctor who spoke to us was very empathetic.  He answered any questions we had and genuinely seemed concerned.  We were also able to meet with a multidisciplinary team that addressed all aspects of ALS.

      We were so pleased with the compassion shown there and the comprehensive evaluation of all aspects of ALS, that I will travel to Minnesota for my appointments every three months as long as my health allows me to do so.

      My initial diagnosis on July 30 was totally heartbreaking.  I am  so thankful that I was able to go to the Mayo Clinic for a second opinion.

      • This reply was modified 12 months ago by Patricia.
    • #16480
      Katherine Hooks
      Participant

      I went yesterday to the Doctor because I had a feeding tube on September 4th and the buttons were going to fall off but it didn’t. So I saw a PA and she cut them off. She also told us in 6 months you will get a call to re place the tube. We were never told that. She said it is not as bad as the first time. I said that was good because they did not put me under and it was very painful. Boy oh boy I think we should stick together because you need to tell us your story because they forget to tell us. Also, I don’t think Hospitals know how to handle ALS patients. Take care. Kathy

    • #16483
      Amanda
      Keymaster

      I’m so disappointed that doctors are not more informed about ALS, and some lack the bedside manner to talk to pALS in an empathetic manner.  It is so important to provide information and help people (regardless of the illness) seek out the information and support that they will need. I spoke to my doctor and shared my family history and information about all of the research studies I have volunteered for over the past 10 years.  Knowing that most diagnoses come around the age of 50 (I’m 53) I thought it was best to mention the genetic mutation, etc.  She said I should go ahead and get my foot in the door with neurology.  They called me to set up an appointment and the soonest I can get in is June 18th. I can’t even imagine what it is like to think you have ALS and have to wait 8 to 10 months just to get an appointment.

      • This reply was modified 11 months, 3 weeks ago by Amanda.
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