I’ve Been Spoiled by My Clinical Trial

I’ve Been Spoiled by My Clinical Trial
3.5
(31)

The new year brings many changes, including the last year of my clinical trial. When I think about the past seven years, I am thankful for the opportunity to join the trial when I did and receive personal care that made fighting MS easier.

It may sound crazy, but I feel spoiled by my clinical trial. Having a team that focuses solely on you makes you feel important.

Personalized care

My clinical trial has always made me feel special. I started the trial in Florida and eventually moved to North Carolina, but I have always had personalized care.

My doctors in Florida had a small research office specifically for research patients. I was the only patient present whenever I had an appointment. The nurses knew me by name, as did the neurologist. The neurologist also spent more time with me than doctors normally do.

The special treatment did not change once I moved to North Carolina. The office is bigger, but I have an infusion room all to myself. I never have to wait, even when the waiting room is full of patients. My nurse comes out to get me as soon as I arrive and stays with me the entire time. She even eats lunch with me! I have a bond with my nurses that many people don’t have.

Nonstop comfort

Sitting in the doctor’s office for 6 to 8 hours with a needle in your arm isn’t the most comfortable. But my nurse always ensures my comfort and makes things as easy as possible. Sometimes I bring food, but the office always provides drinks and snacks. They don’t have to, but the fact that they do makes me feel important.

Check-in calls

Participating in a clinical trial calls for plenty of communication with my nurse. She asks questions that are standard for clinical trials, but goes above and beyond and makes sure I’m OK. Sometimes she checks in between my monthly calls to ask how I am doing. I tell her everything, and she always lets me know that she is available whenever I need her. She is amazing. I make sure to remind her that I am thankful for her.

Best decision ever

I spontaneously joined a clinical trial right after my diagnosis. My MS journey, while hard at times, has been amazing. My doctors and nurses have been a great source of support, and the trial has been the best experience.

I honestly feel spoiled and get sad whenever I think about my trial ending. My doctor’s office is a family, and I feel as though I am more than a patient. I wouldn’t change this opportunity for anything. If you are considering joining a clinical trial, be sure to consult your medical team.

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Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Just a regular girl fighting MS. I am 30 with a Masters in Psychology and motivated to reach out to others like me.
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Just a regular girl fighting MS. I am 30 with a Masters in Psychology and motivated to reach out to others like me.
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5 comments

  1. Mark Salsgiver says:

    I too will miss my clinical trial that I started in Saint Louis ten years ago and then moved to Maryland and continued going back to for my free drug fix twice a year. Not looking to fighting with the insurance company for my fix. I would join a remeylination study in a heartbeat.

  2. Etty says:

    I cannot even find a decent neurologist since the one I had moved several years ago. I also cannot find a decent primary care Dr.in Tucson, AZ.

  3. J says:

    Do you know we are 37th in health care? That’s not due to cost. Again, we are 37th in health care. They have a cure for MS. They have a cure for most things. You have to leave the country. It’s unbelievable.

  4. Ellen says:

    What were these research clinics about? Is it for testing MS drugs? Ones that are not yet on the market? Are there any positive results coming out of these studies? I would have liked more information in this report about details of these research studies and how one gets involved in them.

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