• Here I Go Again

    Posted by Amanda on November 8, 2022 at 1:54 am

    The song, “Here I Go Again” by Whitesnake is rattling around in my brain today. My 6-month pre-fALS clinic visit is coming up on November 30, and December 1, 2022. I’ll spend two days at the University of Miami Medical Center meeting with a couple of doctors. My medical tests typically include an MRI (magnetic resonance imaging) of the whole body, an EMG (electromyography) which tests nerve conduction, and a series of blood tests, urine tests, lumbar puncture, Q-Motor (fine motor skills) and gross motor skills. They also do cognitive testing, memory testing, and a series of lifestyle questionnaires and other inventories.

    I’ve gone to these visits and received both good and bad news. The process is not fun as you well know, but the stress of learning what the results are is the most difficult thing for me to deal with. It terrifying for the most part. Especially when I feel like my symptoms have worsened.

    When you go for clinic visits and they are monitoring your progression do you find it stressful? How do you mentally prepare? Do you do anything enjoyable after your visit as a “treat” to help you decompress? How do you keep track of all the information the team/doctor shares with you?

    Amanda replied 1 year, 3 months ago 8 Members · 8 Replies
  • 8 Replies
  • chris-king

    November 8, 2022 at 2:26 pm

    I’ve never had a clinic visit like that nor a full body MRI or lumbar puncture. Can’t imagine every 6 months, the 3-4 hour sessions that I have every 3-4 months are exhausting and haven’t been that productive after hopefully anticipating the first one. Everyone’s disease progression is so different I feel they’re much more comfortable with a set protocol than individual plans plus I’m at a research/teaching hospital that also is included in the clinic visit! I always take a folder with my questions tagged according to dept. and white board to explain as voice wears down.

    Hopefully others will share their experiences to help everyone better prepare, thanks so much for sharing your thoughts and clinic experience.


    • judy-weger

      November 8, 2022 at 2:35 pm

      Amanda I live in Pinecrest Fl where do you live?

      • Amanda

        November 15, 2022 at 8:40 am

        Hi Judy,

        I’m in Cape Coral near Fort Myers.  We’ve been hurricane central lately :).  When I go for the pre-fALS clinic research visits I go to Miami.

  • john-hamilton

    November 8, 2022 at 3:06 pm

    Hmm, I go to Jefferson’s ALS clinic once every three months. Much less stressful than what you describe, but also much less thorough, I think. Sure, they have me do certain “gyrations” and ask me questions, but, Hey! I kind of look forward to the events! It’s all just palliative stuff. I suppose it gives them info about my ALS progression rates. To me, the best part is being able to e-contact them as often as I wish, to ask questions about my condition.

  • kathywinter

    November 8, 2022 at 3:39 pm

    I find it very defeating at the every 3 month appointments. The whole purpose is to measure my decline and I’m fully aware of my decline. I also feel like there’s a certain path and they try to push you into things. I really like the Palliative Care doctor but I had to really be firm when refusing an antidepressant.  The respiratory therapist pushed me into an NIV with all kinds of condescending lectures till I finally gave in.  (It’s been sitting by my bed collecting dust!).  I was an ICU nurse  for 15 years and am fully aware of what I’m facing.  To get through I pray because my faith in my Savior is holding me up and afterwards I pig out on Culver’s or KFC!!

  • jerry-fabrizio

    November 8, 2022 at 3:59 pm

    I live in St. louis and go to the Washington university clinic.  They do none of those tests.  I am in a drug trial, and they do some checks….

  • gideon

    November 8, 2022 at 6:16 pm

    We stop going to ALS clinic. My wife and I used to go to ALS clinic,

    We find out the the clinic uses my wife as a experimental for NP001, he the Dr refused to prescribe Radiciva for my wife, his opinion is not going to work  for ALS , I  do believe the the main reason is because he was funded by the pharmaceutical company he work for the trial of NP001,  The nurse told on second visit ( my wife was in the  hospital room and they send the Assistant Dr to check on her, we had   very bad experience she the Dr did not give a hoots on my wife condtion )The nurse told me thy on Interesting in patient with first stage of the Disease for research, thy get a million dollars from the pharmaceutical industry sorry for you and your wife. PS any time that we need help with equipment or advise, thy told us you must come in to the clinical, it  look very clear. That money was all about, it is so bad that you have to depend on Dr to refer you to Clinical trial



  • douglas-m-clough

    November 8, 2022 at 6:17 pm

    I go to Barrow and have never experienced that level of clinic. We have clinics at Mayo, the VA and 2 other hospitals and none do them like that. That would be more exhausting than it is now. I was in a clinical trial and expanded access for 5 years.

    Clinic visits are to evaluate progression and aid the patient and family in ways that can help them live with a better quality off life. . It also can help lengthen life expectancy by getting equipment ordered before it’s needed. That may stop falls or help get nutrition into a patient or hello them sleep better.

    It also helps the family and friends. I want my family to know that I’m taking the best care I can to be able to enjoy THEIR lives while I can.


    I would hate to be resigned to my fate without enjoying whatever I can, each and every day. That would be a hard life to live.

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