MS MuSings
Monthly Online Magazine
By and For Those with MS,
Multiple Sclerosis
|
MS MuSings Monthly Online Magazine By and For Those with MS, Multiple Sclerosis |
|
Tables of Contents Other Monthly Please Visit
|
By Jen and Cpearl (and our readers) Thanks to all who contributed questions to our survey-questionnaire. A special thank you to Car, who provided additional attention to this cause. We did our best to include all concerns into this survey format. We sincerely hope that all participate in our survey. To reiterate, all responses are strictly confidential. Please feel free to answer the questions in the simplest manner: Example -- (Just put question number with your answer) 1. No 2. Yes 3. N/A (Not applicable) We will process all answers and provide results in next month’s MsMuSings. Lastly, it is our intention that new insights and frustrations will be brought forward as a means to better treatment and communication for all involved in our diagnosis, treatment and problems associated with MS. Please forward survey answers to either: Jen ( jjttmots@aol.com) or Holly (cpearl4@earthlink.net)Thanks again!
SURVEY Questionnaire ∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞ 1. Does your neurologist think he/she is doing you a favor by accepting you as his/her patient? Yes; No; I don’t know 2. Does your primary care physician and/or your neurologist think some of your symptoms are too outrageous to be true? Yes; No; Sometimes 3. Does your neurologist tend to compare you with other of his/her patients? (Ex. If the medication helps my other patients, it should work for you. - or - My other patients don’t get those symptoms.) Yes; No; Sometimes; Unsure 4. Do you think doctors go back and research their treatments in the event their MS patient dies? Yes; No; Sometimes ; Unsure 5. Do you think that doctors and pharmaceutical companies push the ABC drugs (incl. Rebif, chemo…) too much on MS patients because that’s all we have? Yes; No; Sometimes; Unsure 6. Do you think your doctor is helpful in dealing with ALL aspects of your MS symptoms? Yes; No; Sometimes 7. If you are on multiple medications or even one or two strong medications, do feel your doctor is keeping you monitored enough for possible problems? Yes; No; Sometimes; Unsure 8. Does your neurologist suggest possible lifestyle changes that could help you live a more quality life with MS? Yes; No; Sometimes 9. Do you have problems seeing a particular primary care physician/neurologist because of insurance problems? Yes; No 10. Do the ABC drugs, (incl. Rebif, chemo…) really seem to help you? Yes; No; Sometimes; Unsure 11. Where did you grow up? N.E. United States; S.E. United States; Midwest; Southern States; N.W. United States; S.W. United States; Canada; Northern Europe; Eastern Europe; Other 12. At what age did you start getting symptoms of MS (not necessarily the diagnosis)? 10-15; 16-25; 26-36; 37-45; 45 and older 13. Is your neurologist available to speak with you or see you on short notice? Yes; No; Sometimes; Unsure 14. Is your neurologist willing to speak about alternative forms of treatment or is he/she "strictly by the book?" Yes; No; Sometimes; Unsure 15. Do you believe that scientists have or can quickly find a cure for MS? Yes; No; Unsure 16. Do you believe that scientists can find a proper curative treatment for MS? Yes; No; Unsure 17. Do you feel that the ‘greater" public is aware of MS; that MS stands for multiple sclerosis; and has a general knowledge of the disease? Yes; No; Unsure 18. Would you change neurologists if you could? Yes; No; Unsure 19. Do you feel that MS Organizations are spending their charitable contributions in the correct manner? Yes; No; Unsure 20. Do you visit a neurologist regularly? Yes; No 21. Do you have a neurologist? Yes; No 22. When you visit your neurologist, do you purposely not mention some of your symptoms because they are too embarrassing or too unusual for you to talk about? Yes; No; Sometimes 23. Would you like the OPTION of having medical marijuana available as a therapy for MS symptoms and pain – NOT the synthetic man made pill form? Yes; No; Unsure 24. Is there a North European blood line in your family history? Yes; No; Unsure 25. Do other close family members also have MS? Yes; No 26. Do you have distant relatives who have MS? Yes; No; Unsure 27. Does there seem to be a lot of individuals in your area who have MS? Yes; No; Unsure 28. Do you think researchers can find a cure for MS without knowing the cause of MS? Yes; No; Unsure 29. Did you grow up: Near factories; Rural/farm area; Large city; Small town; Near incinerators; Other 30. Do you take at least one medication for pain or symptoms of MS daily? Yes; No 31. Do you have other medical problems not associated with MS? Yes; No; Unsure 32. Does your doctor get back to you in a timely manner when whatever medication you’re on, starts to bother you? Yes; No; Sometimes 33. Does your doctor get back to you in a timely manner when you develop new MS symptoms or worsening of old symptoms? Yes; No; Sometimes 34. Do the MS organizations in your area give you helpful information or assistance when you phone them? Yes; No; Sometimes; Never call 35. Is your doctor helpful in providing you with appropriate paperwork and instructions for: insurance; obtaining medical equipment; any other letters or paperwork you may need from him/her? Yes; No; Sometimes 36. Does your doctor appear to have solid knowledge about MS and/or symptoms of MS? Yes; No; Unsure 37. Where do you get MOST of your MS information? Doctor; MS Organizations; Friends w/MS; Support group; MS publications; Internet Seminars 38. If you get occupational or physical therapy, does it seem to help you? Yes; No; Somewhat 39. Is your MS treatment/therapy the same regardless of the kinds of symptoms/or type of exacerbation you happen to be experiencing? Yes; No; Mostly the same 40. Were you prescribed a drug that could give you worse side effects than the problem for which it was prescribed? Yes; No 41.a. Do you have vision problems due to MS? Yes; No 41. From your experience, does your general practitioner seem to know the symptoms of MS – or what to look for? Yes; No 42. Did your G.P. diagnose your MS? Yes; No 43. Do general practitioners need more education in the symptoms and diagnosis of MS? Yes; No; Unsure 44. How long did it take between your first MS symptom and your diagnosis? One week to six months; Seven months to a year; One to two years; 3 or more years Still not diagnosed positively 45. Do you have cognitive problems? Yes; No 46. When you travel, do you get disoriented easily? Yes; No; Sometimes 47. In spite of popular literature, do you feel that chances of dying at an early age because of MS complications are greater? Yes; No; Unsure 48. Is there a difference, in your opinion, between dying of MS and dying of complications due to MS? Yes; No; Unsure 49. Do you have a low core body temperature? (Under 98˚) Yes; No; Do not know my temp. 50. Do you, or have you, ever smoked cigarettes? Yes; No 51. Did you encounter second-hand smoke as a child? Often; Sometimes; Rarely; Never 52. Do you need to "vent" a lot to other MSers because of unanswered or difficult questions that neurologists ignore? Often; Sometimes; Rarely; Never 53. Has a neuro or other physician given you insights on how to stop/manage the cognitive effects of MS? Yes; No 54. Do you feel hurt and not taken seriously when you’re not feeling well and people (and sometimes doctors) say, But you look so well! Yes; No; Never was told 55. Would you like to have a test that will let you know the end progression of your MS before time? Yes; No; Unsure 56. Are you sometimes treated like you’re incapable of doing even the simplest tasks/chores? Yes; No 57. Are you sometimes expected to do tasks and chores that you’re physically incapable of doing? Yes; No 58. Do you have bladder problems? Yes; No; Sometimes 59. If so, are you happy with your treatment/supplies? Yes; No 60. Do you think there is a "special" or "gifted" doctor somewhere in the world that knows a curative treatment for MS? Yes; No; Unsure 61. Do you have a difficult time with ‘irregularity?’ Yes; No; Sometimes 62. Have you been satisfactorily helped in this area by your physician? Yes; No; Sometimes 63. Do you need medical help in achieving sexual intimacy? Yes; No; Sometimes 64. Have you ever asked and received help from your doctor re: sex? Yes; No 65. If having a healthy sex life is important, yet difficult for you, does your partner understand and try to help you to work out solutions? Yes; No; Sometimes 66. Do you believe physicians provide you with meds you don’t particularly want, only to save themselves from a possible lawsuit? Yes; No; Unsure Yes; No; Unsure
70. Did you ever wonder why the medicines’ indications are always in such tiny print, esp., since many MS folks have vision problems?
Yes; No; Never thought about it
71. Did your neurologist ever tell you that he/she has knowledge of all the latest treatments/meds for MS because his/her MS patients come into the office to share the latest information?
Yes; No
72. In our age of progressive technology, do you think a spinal tap is still necessary in the diagnosis of MS?
Yes; No; Unsure
73. Do you endure excrutiating pain on a daily basis?
Yes; No
74. If you answered, YES, to the above question, is there a medication you take that eliminates your pain?
Yes; No; Sometimes
75. Is there harm in Neurologists trying new forms of treatment for MS?
Yes; No; Unsure
76. Would you like to participate in alternative forms of treatment, i.e., yoga, massage therapy, swimming, but such activities are not available to you, or too expensive?
Yes; No; Sometimes
77. Do you think all people with MS should exercise – even if the "exercise" is performing simplistic movements?
Yes; No; Unsure
78. In your opinion, do you think there is a ‘BEST’ treatment for MS?
Yes; No; Unsure
79. Do you suffer from fatigue?
Yes; No; Sometimes
80. If so, were you given helpful therapy?
Yes; No
81. Do you believe that MS people who have the inability to walk caused this situation themselves because they didn’t "use" their legs more fully?
Yes; No; Unsure
82. If you were diagnosed with Chronic or Primary Progressive MS, are you being given a new form of treatment and/or are you aware of research in new treatments?
Yes; No
83. If you are a woman who experienced the loss of the ability to achieve orgasm, did you and your doctor ultimately reach a solution to this problem?
Yes; No; Sometimes;
Too embarrassed to bring up the subject
84. If you have used a particular MS medication for a long period of time and your MS is still progressing, is this medication really helping you?
Yes; No; Unsure
Yes; No; Sometimes
86. Men, do you have your prostate gland checked more often since being diagnosed with MS?
Yes; No; N/A
87. Ladies, do you have gynecological exams more frequently since being diagnosed with MS? Yes; No; N/A 88. Do you experience vertigo? Yes; No; Often 89. Do you have a problem with taste buds?
Yes; No; Sometimes
90. Do you feel people, "Still Don’t Get it"?
Yes; No; Sometimes
Please forward survey answers to either: Jen ( jjttmots@aol.com) or Holly (cpearl4@earthlink.net)Thanks again! |
