MyMS App study

[Bygonelines]

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

[cnichols]

Great, I am going Wednesday to upload my MRI, I have an iPad so no cd drive. Hoping I can qualify too.

[jimeka]

Bygonelines i hope it is successful for all involved. Keep us posted, blessings Jimeka 🦋 🌈

[agate in reply to jimeka]

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.

[Amore55]

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 in reply to Amore55]

Amore55 , I'm sad to hear you're still sick. Are you doing any better?

[Amore55 in reply to greaterexp]

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

[Doubled51 in reply to Amore55]

@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.

Donnie.

[greaterexp]

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.

[RobertCalifornia]

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.