Short survey for my school leaving examination work :)

Gilenya, or Fingolimod, is the first approved oral disease modifying drug for MS.

Short survey for my school leaving examination work :)

Postby wylerj » Fri Sep 27, 2013 7:00 am

Dear MS-Patient,

Twelve years ago my mother came down with MS. The nescience about this theme has really employed me. That’s why I decided to make my work for general qualification for university entrance about this interesting issue.
I’m conscious of not-being the first guy who wants to do this and I’m also not the last one. However I would be really thankful if you would take just five or ten minutes to answer to my questions.
My work I specialize in the medicaments Tysabri and Gilenya. I’ll compare them in matters of clinic, social and society changement. That’s why this survey is now in this forum.

For answer my questions, I’d like to send you my finished work, if you like to get it. But you have to wait some months, because I’ll finish it in January 2014 (until then you can make the survey).

I’ll thank you in advenge for your help and I’wish you much power fort he future ☺

All your information I’ll use anonym and if you don’t want to answer the questions in the forum, you can send me the questions to the following e-mail adress

wylerj@mng.ch

Best wishes Jeremy Wyler

P.S.: I’m sorry for my bad english, but I hope you will understand the questions ☺



Dear MS-Patient,
General information:
1. Age
2. Sex
3. When did you get a diagnosis for MS (Year & Month)
4. What is the number for your Expanded Disability Status Scale (EDSS)

5. Is your ability to move affected?

Information about Gilenya:
1. When did you begin to take Gilenya
2. Why did you decided to start taking Gilenya
3. Please describe your satisfaction with Gilenya on a scale of 1 to 3 (1= really dissatisfied, 3 = really satisfied)
4. Since you started Gylenya, how has your ability to move changed? (1 = ability less than before; 2 = ability to move the same as before; 3 = ability to move is more then before)?
5. Do you have a pet or not since you started to take Gilenya?
6. Have you gained weight since starting Gilenya?
7. What are the most common side effects you have noticed since starting Gilenya?
(Examples: Fatigue, spacticity, less leukocytes in the blood, migraine, Acne, bad liver test results etc.)
8. Are you concerned about a Rebound if you were to stop taking Gilenya?
9. Since you started Gilenya, do you have more side effects or depression then before starting Gilenya?
10. Do you think you have too little opportunity to talk about your medication or do you wish for more opportunities?
12. Are you still working or have you stopped working since starting Gilenya?
If yes: What does your boss or superior or client say about your illness?
13. Have you already thought about a change to Tysabri?
If yes: Why have you stuck with Gilenya?
14. Do you have a fear of taking Gilenya because of it lacking a long-term study?
15. Have you met more people or friends since you started taking Gilenya?

Thank you very much for your time and answers!
wylerj
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Re: Short survey for my school leaving examination work :)

Postby CureOrBust » Tue Oct 08, 2013 5:06 am

1. Age: 42
2. Sex: Male
3. When did you get a diagnosis for MS (Year & Month): 2003/06
4. What is the number for your Expanded Disability Status Scale (EDSS): 4

5. Is your ability to move affected?: Yes

Information about Gilenya:
1. When did you begin to take Gilenya: About 2011
2. Why did you decided to start taking Gilenya: I was on no other MS Treatment, and hated injections, and also read that it may improve disabilities.
3. Please describe your satisfaction with Gilenya on a scale of 1 to 3 (1= really dissatisfied, 3 = really satisfied) : 2 (id say 1.5 if decimals were an option)
4. Since you started Gylenya, how has your ability to move changed? (1 = ability less than before; 2 = ability to move the same as before; 3 = ability to move is more then before)?: 1 (more because of the effects of time with MS than specifically the treatment)
5. Do you have a pet or not since you started to take Gilenya? : No
6. Have you gained weight since starting Gilenya?: No
7. What are the most common side effects you have noticed since starting Gilenya? : When I first started, I felt a little more "Phlammy", but that quickly [assed, and I would have to say None.
(Examples: Fatigue, spacticity, less leukocytes in the blood, migraine, Acne, bad liver test results etc.)
8. Are you concerned about a Rebound if you were to stop taking Gilenya?: not much if any. ie No
9. Since you started Gilenya, do you have more side effects or depression then before starting Gilenya?: No
10. Do you think you have too little opportunity to talk about your medication or do you wish for more opportunities?: I have enough. But my Neuro does not specifically ask, I simply know its up to me to say something.
12. Are you still working or have you stopped working since starting Gilenya? : Still working
If yes: What does your boss or superior or client say about your illness?: No-one specifically knows I have MS
13. Have you already thought about a change to Tysabri? No. Rebound, fear of the effects if I have the brain infection (worse irreversible effects than MS) and the monthly intrusion / inconvienience of the infusion.
If yes: Why have you stuck with Gilenya? No side effects
14. Do you have a fear of taking Gilenya because of it lacking a long-term study? Close to none.
15. Have you met more people or friends since you started taking Gilenya? None.
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CureOrBust
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Re: Short survey for my school leaving examination work :)

Postby wylerj » Tue Oct 08, 2013 9:58 am

Dear CureOrBust,

I thank you a lot for answering to my questions. If you would send me your email adress I'll send you my finished work. Tht would be the least I can do for your support!

Thank you a lot and wish you all the best for your future :)

Best wishes Jeremy
wylerj
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Posts: 4
Joined: Mon Sep 23, 2013 6:09 am

Re: Short survey for my school leaving examination work :)

Postby CureOrBust » Wed Oct 09, 2013 2:06 am

I would also guess that if someone wishes to remain anonymous or for some other reason would prefer not to answer you questions in a public forum, that you would be more than happy to receive their response via a PM, to the above questions.
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Re: Short survey for my school leaving examination work :)

Postby wylerj » Wed Oct 09, 2013 2:55 pm

Yes that's correct!
But that's the reason why I postet also my email adress. So everyone can answer my question anonymous!
wylerj
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