About 4 months ago I posted about a study I saw in MS News Today. The study is being done by USC Multiple Sclerosis Center in LA, CA. Well over the weekend I received notice they wanted more information from me and permission to look at a set of MRI's of mine to determine if I fit the criteria for being in the study. So I filled out the survey and uploaded my MRI's. I just found out this evening that I have been accepted into the study. It will be fairly easy to do. Tomorrow I need to do a baseline test on my vision, my cog function, my walking ability, and my quality of life. Then I need to do 2 surveys, 1 on my MS history and 1 on my environmental history. The 4 tests can be done as frequently as I wish but they do want at least once every 2 weeks. The 2 surveys are done every 3 months. The study is planned to go for at least a year and I can of course drop out at any time. I did a practice run on the tests and they are quick and easy. They should take me no more than 5-10 min every 2 weeks. The 2 surveys will take 10-15 min each every 3 months.
At the end of 3 months I have the option of having genetic testing done by 23 & Me. It is not required but I will do itbecause Ihave wanted to do it for a couple of years now but haven't had the extra $200 to do it through them.
I am hoping I can use the information I get from this to help prove my disability case. I will be going on disabilty by Dec 23rd. Hopefully I can make it till then.
Going on disability scares the wits out of me! Not sure how we will make it on so much less income. I suppose we can always take on a boarder if money gets too tight.
Sorry this is so long.
Jacqui
Written by
Bygonelines
To view profiles and participate in discussions please or .
Bygonelines , good luck with the study! It sounds really interesting and quite possibly helpful to you in several ways. I take part in studies from time to time too. Having the genetic testing should be informative and useful. I hope you'll let people know how all of this goes.
Jacqui, that sounds so interesting! And you get your genetic testing done too. That's my Jacqui! I totally understand how you feeel about the loss of income that disability brings. I went from making $55,000 a year to $12,000!!!! 😖😖😖 But I was SO sick I did not have any choice. Somehow we adjusted life and it all works. I will be praying you find your answer. Sorry I haven't called, I miss you. I have just been really sick. Will talk soon. Love you dear friend! Kelly
greaterexp Thanks for your kind words. I am going to live! 😜 I am just struggling as my disease seems to be on super zoom progression. I got a wheelchair which helps. It could be much worse. I just count my blessings. Probably the hardest thing is I have not driven for almost two months. Very frustrating! You are in my prayers as always. Love, Kelly
@amore55. Good to hear from you. So sorry your having such a hard time with this monster. Are you still on Plegridy. I just started month 4 and last brain and cervical MRIs were clear except 1 small lesion on cervical which was inactive. I don't know what I'd do if I couldn't drive. Praying you get better soon. Blessings.
Bygonelines , I'm so glad you were accepted into the study, especially if it not only helps others, but can help you! I'm glad input is not too overwhelming, too.
Do note afraid of going on disability. I was forced to because of deteriorating mobility. I had been in the same industry for over 30 years. The loss of income is hard to get used to, but I now have time to work on fighting MS. My neurologist told me that I needed to be ready mentally before she would put me on disability. When I finally said I was ready, after a total collapse in the shower one Saturday, she said I should have done it 1-1/2 years earlier. I look at the bright side. No more getting up Monday mornings and worrying about what could and would go wrong that week.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
RRMS TO PPMS
Research Study on COVID-19 Vaccines in People with MS
Defining primary progressive MS.
