Evoked Potentials

I had a pile of prescriptions for drugs and tests to be filled as I wait for the damned trial to begin.  Part of me thinks this has been a way to make sure I am busy and keep me out of the bars until clearances come through and we can stop talking and start doing.  The non-pace has been driving me crazy.

Dutifully, I worked my way through the list.  There was a test called, evoked potentials, which was tough to schedule.  I had to go through the epilepsy department at Columbia Presbyterian Hospital up by the George Washington Bridge.  I knew nothing about the procedure, only that it would provide a baseline for measuring change, should there be any a year or so after the stem cell infusions began.

I was ushered into a room full of high tech gadgetry, and a pleasant technician began fastening electrodes to various spots on my head.  He told me we would start with my eyes, then work with hearing before – pause – finishing with tests  I “would not like too much.”  He added that he would be asking me to lie on an examination table and pull the legs of my jeans up over my knees.

Okay.

After working on eyes and ears and listening to vague references to the final tests, it occurred to me he was sending me a less than subtle message that pain and suffering would not be far behind the tests north of the neck.  How bad could it be? I wondered.

Bad.

There I was, on my back, pant legs rolled up and electrodes and stray wires everywhere.  If I looked like the Bionic Man, I had not signed up for the role.  When the guy was ready and assured me he would begin with a low current going into one leg at a time, it occurred to me this would be a good time to disembark and go to lunch.

True to his word, the man in scrubs did start with my left leg and move to my right.  I wondered if he had a black hood on. The current was low and only mildly uncomfortable.  All went well, until he told me he was going to increase the current until he saw a certain twitching, which did not seem to be happening.

“Are you with me?” He asked.  “Can you take more?”  I thought I smelled something burning.  By now my legs ere slightly above the table and shaking violently.  Are they freaking twitching? I asked politely.  “Yes.  You are doing great,” he responded, demonstrating no interest in cutting the power.

“Okay, we’re done,” he finally announced as my legs went limp.  “Now we will do your wrists.  This will not be as bad as your legs.”  Right.  My arms felt like they were going to pop out of their sockets.  When we were done, Dr.  Mengele walked me down the hall to the elevators.  The technician’s boss, who had screened the data on a monitor in his office, stepped into the corridor, smiled a celled from a distance, “Is that the guy you tried to execute?”

Very funny.

Everybody there that day was very nice, actually, and only collecting data that may be critical in evaluating change.  I have thought of myself as a pioneer in this process, going where no one has traveled before.  It was time to toughen up.  Playing trail blazer is no game for the timid.

 

28 Responses to Evoked Potentials

  1. Matt March 7, 2014 at 1:58 pm #

    We are all so proud of you Richard and Thank You!

    • Richard M. Cohen March 7, 2014 at 2:42 pm #

      Matt-

      Thanks. All I can say is this freaking trial better work.

      R.

      • Matt March 7, 2014 at 2:48 pm #

        It will and that is not a hope it is a fact. Our stem cells are there for a reason. Our maker knew what they were doing. It was our responsibility to find it and make it work!

  2. Laurie March 7, 2014 at 2:36 pm #

    You did it Richard! Gold medal.

    • Richard M. Cohen March 7, 2014 at 2:43 pm #

      I will settle for Bronze if this trial works.

      R.

  3. Lori March 7, 2014 at 3:05 pm #

    Yes, it will work! Thanks to you it is moving forward! Hope you didn’t have any lasting pain or discomfort from the procedure.

    • Richard M. Cohen March 7, 2014 at 4:08 pm #

      Thanks.

      R.

  4. Nancy Cincotta March 7, 2014 at 3:59 pm #

    I never thought the trial was going to be so difficult. Were you informed of the level of testing that had to be done after blood was taken? I thought the procedure of taking blood from your bone marrow was as difficult as it was going to be. I am really not feeling as determined as I was before in participating. Thank you for being so open about this trial. I am afraid but continue to be hopeful. Nothing comes easily.

    • Richard M. Cohen March 7, 2014 at 4:13 pm #

      Nancy-

      That is right. Nothing worth doing comes easy. We are making it up as we go. This is new for all. I think it equires patience

      I am learning.

      R.

  5. Nicole March 7, 2014 at 8:36 pm #

    They say patience is a virtue, but I don’t think they knew about this process then! Thank you so much for doing this and sharing it with the rest of us

    • Richard M. Cohen March 8, 2014 at 1:28 pm #

      Nicole-

      A privilege. We are in this together.

      R.

  6. Betty Moody March 8, 2014 at 9:26 am #

    Richard and Nancy,
    Are you participating in the same trial?

    • Nancy Cincotta March 9, 2014 at 1:49 pm #

      Betty,
      I am not in a trial as of yet. I have hopes that Richards trial wiki open the doors for the rest of us.
      Nancy

  7. Christopher March 10, 2014 at 4:29 am #

    Somatosensory EVP sucks, in a word. I had it done when I was first being diagnosed 13 years ago–to see whether my problems were stemming from central nerve or peripheral nerve disease/damage. The doctor also used needles (electromyography) at the same time. Not fun. At the time I suppose my disease hadn’t developed very far since the results showed normal nerve conduction. It took another 18 months of varied tests to get a definite diagnosis. I still remember how it felt like someone shot me in the leg with a captive bolt gun.

    BTW… great sense of humor, sir.

    • Richard March 10, 2014 at 11:06 am #

      I think these baseline tests are stupid. In the end, how we feel and our own perceptions of possible change are all that matter. I do not care that the executioner thinks life is better or worse.

      R.

      • Christopher March 10, 2014 at 3:13 pm #

        I agree.

      • Carol March 11, 2014 at 2:40 am #

        I see your point. My thinking is that because it’s a trial, they need to be able to demonstrate physical, measurable results. Hence the battery of tests. Reminds me a bit of what I went through before and in the several weeks after my diagnosis — 23 in all, no joke. And there I was being just as cheerful as anyone could be, thinking my new mission in life was to be a world-class wonderful patient. That wore off soon enough… 🙂

      • Carol March 11, 2014 at 2:49 am #

        P.S. Hang in there.

  8. Caren March 11, 2014 at 11:11 am #

    Thank you for sharing your experience & not giving up on the trial. I am sorry
    it was so painful. You have more people routing for you and praying for you then you
    know. Also for Dr. Sadiq and all the people involved in this research.
    Much luck to you!

    • Richard March 12, 2014 at 1:06 pm #

      Thank you.

      Best,
      R.

  9. Geof March 12, 2014 at 8:23 am #

    I would think the worst part would be knowing that this being a “baseline” means they intend to do the tests again. How do they account for the daily variation of disease symptoms? For me, I have days where I don’t feel my phone vibrate at all and others where I feel it on the wrong leg. Is the signal transmission they measure so regular as to make the daily variance immaterial?

    • Richard March 12, 2014 at 1:08 pm #

      Beats me. The prospect of doing it again thrills me.

      Just feling better is my measure.

      R.

  10. Nancy Novak March 12, 2014 at 1:37 pm #

    Even with the discomfort (putting it mildly?) you are experiencing, I am jealous. I’ve looked into this trial and have been told the recruiting of 20 has been completed through the doctor’s own practice. Hoping something else opens up. I am anxious to hear results, as I am sure you are to experience them. Best of luck. You’ll certainly be in my prayers.

    • Richard March 13, 2014 at 9:29 am #

      Nancy-

      Thanks. If this trial works, all of us are the winners. Plenty of room on this bandwagon.

      Best,
      R.

  11. Carmen March 12, 2014 at 3:21 pm #

    You are my new human benchmark for bravery. I hope the rest of the trial-related procedures you endure are less traumatic.

    • Richard March 13, 2014 at 10:09 am #

      Carmen-

      All is well.

      Anxious to move forward.

      Thanks.

      R.

  12. Matt March 13, 2014 at 8:21 pm #

    Hang in there Buddy! After you have this done l’ll buy the drinks!

  13. Cindy Brenden March 17, 2014 at 4:52 pm #

    With your illness, you put words to describe what a day in the life is really like for many M.S. sufferers that have been silenced by M.S. The tests, the side effects !!!, you would like to to joke your way out of it, but you feel like heck! Thanks for telling the story that some of us lead in our daily lives. I know a physician here in Seattle who has done a bone marrow transplant. He is very positive on the technology. His patient has made some recovery, God Bless him. Even shows up in the audience of the Dr.’s talks (unannounced) to say “Hi” to the Doc! He was in very bad shape and he had improved quite a bit from what I saw on UTube. I will look him up again and see how he is doing. Keep on truckin! Richard.