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PLS study at NIH

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Nikki J

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Is anyone here in it? It is observational so no intervention. See it has been ongoing for years but still recruiting.

It looks like the physician is Mary Kay Floeter who specializes in PLS. I am in a NIH genetic ALS study. If it is run the same way they pay your travel,hotel and give you some money for meals. With ALS they also pay for travel for a companion/ caregiver. If you are in the US and can travel you might want to look into it
 

Schmutz

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The idea of traveling terrifies me, but I will look into it . Thanks for the info.

Anne
 

Nikki J

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It is listed on clinical trials dot gov. Do ctor Floeter is awesome. She is a PLS specialist but she is a co investigator in my study and did some of my testing. If you want to know anything about the general NIH experience let me know. I think the travel etc would be the same and a lot of the tests probably overlap. One thing I found different than the other observational study I do is they schedule fewer things each day and it is less tiring.
 

LouLou

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Nikki - I am in the History of Primary Lateral Sclerosis study at NIH. I had my first visit there last July (2013). Mary Kay Floeter is my doctor and she is awesome! What an amazing experience. They want me to return so I'm hoping to go again this coming summer. I feel good about giving just my time and body to hopefully find a cure for this terrible disease. The accommodations were great. My sister traveled with me and I'm hoping my husband can the next time. Thank you for participating in the study! LouLou
 

Nikki J

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Hi LouLou. I felt the same way about my study experience which is not your PLS study by the way but the genetic ALS C9 study. Did you stay at the Doubletree? I did and we had a fire alarm at 130 am the first night! But otherwise fine. I bet our study tests are similar. I had neuro exam, blood tests, pulmo tests, swallow eval, neuropsych test,spinal tap, mri, emg,ncs, the gait,speech coordination tests and the TMS. This next visit they are adding a skin biopsy. Did you have all those? I hope you are able to do your follow up As you say amazing experience and so cool that maybe our bodies can help them find answers!
 
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