Multiple Sclerosis in Multiple Birth Children Survey

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* 1. I am the:

Parent/Guardian of a child diagnosed with Multiple Sclerosis

Multiple birth child/adult diagnosed with Multiple Sclerosis

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* 2. How many multiple birth siblings have been diagnosed with Multiple Sclerosis?

One

Two

three or more

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* 3. What is the gender of the person affected with the disease? If two or more are affected, please indicate gender of each.

Person 1:

Person 2:

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* 4. At what age was the disease diagnosed?

Person 1:

Person 2:

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* 5. Has either biological parent been diagnosed with this disease?

Yes, maternal

Yes, paternal

Yes, both

No, not affected

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* 6. Have any other siblings in the family been diagnosed with this disease?

Yes

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* 7. Does the person affected with MS have another condition?

Yes

If yes, please list:

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* 8. Following are a list of symptoms often seen with Multiple Sclerosis. Please rate affected persons symptoms on sliding scale:

	Constant	Daily	Often	Sometimes	Not Affected
dizziness/vertigo	dizziness/vertigo Constant	dizziness/vertigo Daily	dizziness/vertigo Often	dizziness/vertigo Sometimes	dizziness/vertigo Not Affected
fatigue	fatigue Constant	fatigue Daily	fatigue Often	fatigue Sometimes	fatigue Not Affected
bladder problems	bladder problems Constant	bladder problems Daily	bladder problems Often	bladder problems Sometimes	bladder problems Not Affected
bowel dysfunction	bowel dysfunction Constant	bowel dysfunction Daily	bowel dysfunction Often	bowel dysfunction Sometimes	bowel dysfunction Not Affected
depression	depression Constant	depression Daily	depression Often	depression Sometimes	depression Not Affected
emotional changes	emotional changes Constant	emotional changes Daily	emotional changes Often	emotional changes Sometimes	emotional changes Not Affected
itching	itching Constant	itching Daily	itching Often	itching Sometimes	itching Not Affected
numbness/tingling	numbness/tingling Constant	numbness/tingling Daily	numbness/tingling Often	numbness/tingling Sometimes	numbness/tingling Not Affected
spasticity	spasticity Constant	spasticity Daily	spasticity Often	spasticity Sometimes	spasticity Not Affected
tremors	tremors Constant	tremors Daily	tremors Often	tremors Sometimes	tremors Not Affected
walking/gait difficulties	walking/gait difficulties Constant	walking/gait difficulties Daily	walking/gait difficulties Often	walking/gait difficulties Sometimes	walking/gait difficulties Not Affected
sexual problems	sexual problems Constant	sexual problems Daily	sexual problems Often	sexual problems Sometimes	sexual problems Not Affected
vision problems	vision problems Constant	vision problems Daily	vision problems Often	vision problems Sometimes	vision problems Not Affected
cognitive changes	cognitive changes Constant	cognitive changes Daily	cognitive changes Often	cognitive changes Sometimes	cognitive changes Not Affected
heat/temperature sensitivity	heat/temperature sensitivity Constant	heat/temperature sensitivity Daily	heat/temperature sensitivity Often	heat/temperature sensitivity Sometimes	heat/temperature sensitivity Not Affected
Pain	Pain Constant	Pain Daily	Pain Often	Pain Sometimes	Pain Not Affected

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* 9. Which of the symptoms has been most life-altering for the affected person?

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* 10. What symptoms to date have been most life-altering for the family unit?

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* 11. Has the person diagnosed ever participated in the following activities?

smoking

drinking

both

No, have not participated in either

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* 12. Does the diagnosed person continue to be mobile?

Yes

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* 13. What life changes does the affected person participate in to assist with symptoms?

diet/nutrition

exercise

motion exercises/physical stimulation activities for specific areas

mentally stimulating activities to help build cognitive reserves

good sleep habits

Other (please list)

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* 14. What resources do you currently have to help?

MS advocates – organization or local group

Healthcare team

Financial support

Emotional support?

Crisis intervention?

family/friends - physical support/day to day needs

Other (please specify)