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Multiple Sclerosis Questionaire
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Multiple Sclerosis Questionaire
Multiple Sclerosis Questionnaire
General Information
Status
Mrs
Miss
Mr
Other
Status
First Name
*
Surname
*
Accessibility
Any Accessibility Requirements
Not Needed
Wheelchair Manual
Wheelchair Motorised
Wheelchair Assistive
Crutches
Communication Device
Sight Assistive Device
Hearing Aids
Other
Other
Multi-Select
Your MS
Diagnosed Types
Not Known
Relapsing
Secondary Progressive
Primary Progressive
Other
Other
Relapsing remitting MS (RRMS)
Relapsing-remitting MS is a type of MS where you have relapses (symptoms getting worse) followed by recovery (that’s when it’s “remitting”). Your disability doesn’t get worse between relapses but after each relapse, it can end up worse than before. As time goes on your body finds it harder to repair the damage each relapse brings. So your disability is likely to get worse, especially if you don’t start treatment. What is a relapse? A relapse is defined by “the appearance of new symptoms, or the return of old symptoms, for a period of 24 hours or more – in the absence of an infection or a change in your core body temperature. On top of that, 30 days must’ve passed since your last relapse or flare-up of symptoms. Symptoms you have experienced before, or perhaps grown used to dealing with, might appear in a different part of the body. In relapses, symptoms usually come on over a short period of time – over hours or days. They often stay for a number of weeks, and for most people are usually over within a month. But this can vary, from very short periods of only a few days, to many months. Relapses can vary from mild to severe. At their worst, acute relapses may need hospital treatment, but many relapses are managed at home, with the support of your GP, MS specialist nurse, and other care professionals. Symptoms which come and go can sometimes be considered a relapse – they don’t always have to be continuous. For example, some people experience a shock-like sensation when they bend their necks. This can be considered a relapse if, for 24 hours or more, this happens every time you bend your neck. Medical staff might call relapses things like an attack, flare-up, exacerbation, acute episode or clinical event.
Secondary progressive MS (SPMS)
What sort of changes happens when you move from relapsing to secondary progressive MS (SPMS)? Usually, with secondary progressive MS, your disability or other symptoms gradually get worse. The old pattern of you getting relapses followed by you getting better usually comes to an end. Some people may still get relapses but they don’t tend to make a full recovery afterwards. You might notice more difficulties with getting around than before, or other symptoms might get worse. Changes can happen very slowly though. It might take some time before you and your doctor are sure you have secondary progressive MS. Everyone’s MS is different – even if someone else has secondary progressive MS, they’re likely to be affected in an individual way.
Primary progressive MS (PPMS)
How is primary progressive MS (PPMS) different from other types of MS? The difference between types of MS can be loosely organised by the way symptoms present and build up. In relapsing MS there are distinct relapses. These can be mild or severe and people can recovery on their own or with treatments and therapies. Secondary progressive MS (SPMS) develops out of relapsing MS as the body struggles to recover from the cumulative impact of relapses. Disability worsens independently of relapses. Thanks to DMTs fewer people develop SPMS and it can take longer to happen. Primary progressive MS doesn’t develop from relapsing MS because there are no, or few, relapses to progress. We don’t know yet what’s damaging the nerves in PPMS, as little or no inflammation shows up in scans. Active primary progressive MS (PPMS) Some people also get relapses early on in primary progressive MS, or their scans show inflammation in the shape of new lesions. This is called active primary progressive MS (it used to be called ‘progressive relapsing MS’). ‘Active’ here means the person’s immune system is still attacking the myelin around nerves in their brain or spinal cord, and causing inflammation. A relapse or new lesions on MRI scans are signs of this.
Other
Please add information
Co-existing Issues
Co existing issues
None
Ataxia
Other
Other
Ataxia Type
Brain Tumour
Cerebellar Ataxia
Hereditary
MS
Stroke
Trauma
Other
Other
Issues (multi-select)
Balance
Walking
Speaking
Swallowing
Writing
Eating
Vision
Hearing
Other
Other
Other
Other
Speaking How?
Slow Speech
Slurred Speech
Slurred Slow Speech
Communication Board
Eye Movement Communication Board
Rather not say
Other
Other
Hearing Support?
No Captions Needed
Captions
Sign Language
Other
Other
Counselling History ?
Have you had Funded Sessions in the Past? (Not Disabilityplus)
No
Self-Paid
NHS Funded (CBT Counselling)
Specialist Mental Health Hospital (NHS)
Professional Organisation
Employment Support
School/University
Other
Add each type of counselling from the list above, if more than 1 set of Counselling (NHS example) use other
Self-Paid Year
How many? approx (SP)
NHS Funded Year?
How many? approx (NHS)
Employment Support year?
How many? approx (EAP)
Professional Organisation Year?
How many? approx (PO)
Who?
Other Year?
How many? approx (other)
School, University Year?
How many? approx (education)
What Hospital?
What Year?
How many sessions? approx (other)
Your Care or Carer
Do you have carer?
Not Needed
Partner
Sibling
Social Services
Other
Other
Are you in care?
No
Supportive Care
Palliative Care
Hospice Care
Other
Other
Carer Hours
Part-time
Full-time
Live-in
Other
Other
In Care Hours
Part-time
Full-time
Live-in
Other
Other
Your Carer? (multiple choices)
Happy with carer
Content with carer
Feel unsupported
Feel controlled
Feel financially controlled
Abusive carer
Prefer not to say
Multiple carers
Cannot bond with carer or carers
Other
Other
Your Care? (multiple choices)
Happy with my level of care
Feel unsupported
Feel controlled
Prefer not to say
Other
Other
Do you feel the care or carer you receive contributes to your mental health problems?
No
Yes
Sometimes
Prefer not to say
Other
Other
Thoughts and Symptoms
How confident are you in making decisions for yourself?
Confident
Ok
Not Confident
Other
Other
Any Symptoms? (Multi-Select)
Temor
Slowed Movement
Rigid Muscles
Impaired Posture Balance
Loss of Automatic Movements
Speech Changes
Writing Changes
Fatigue
Numbness
Pain
Bladder Problems
Bowl Problems
Vision Problems
Other
Other
Tremor Severity
Mild
Moderate
Severe
Other
Other
Slowed Movement Severity
Mild
Moderate
Severe
Other
Other
Rigid Muscles Severity
Mild
Moderate
Severe
Other
Other
Impaired Posture/Balance Severity
Mild
Moderate
Severe
Other
Other
Writing Changes Severity
Mild
Moderate
Severe
Other
Other
Loss of Automatic Movements Severity
Mild
Moderate
Severe
Other
Other
Speech Changes Severity
Mild
Moderate
Severe
Other
Other
Fatigue Severity
Mild
Moderate
Severe
Other
Other
Fatigue Frequency Average
Daily
2 Days per week
3 Days per week
4 Days per week
5 Days per week
6 Days per week
Other
Other
Numbness Severity
Mild
Moderate
Severe
Other
Other
Numbness Frequency Average
Daily
2 Days per week
3 Days per week
4 Days per week
5 Days per week
6 Days per week
Other
Other
Numbness Where?
Whole body
Arms
Legs
Fingers
Toes
Other
Other
Pain Severity
Mild
Moderate
Severe
Other
Other
Pain Frequency Average
Daily
2 Days per week
3 Days per week
4 Days per week
5 Days per week
6 Days per week
Other
Other
Pain Where?
Whole body
Arms
Legs
Fingers
Toes
Back
Neck
Other
Other
Vision
Slight Vision Loss
Severe Vision Loss
Other
Other
Other Severity
Mild
Moderate
Severe
Other
Other
Mood Assessment
Are your relationships intense, and unstable, and alternate between the extremes of over-idealising and undervaluing people who are important to you?
Yes
No
Sometimes
Do your emotions change quickly, and you experience intense episodes of sadness, irritability, and anxiety or panic attacks?
Yes
No
Sometimes
Do you engage in recurrent suicidal behaviours, gestures, threats, or self-injurious behaviour such as cutting, burning, or hitting?
Yes
No
Sometimes
Is your level of anger often inappropriate, intense, and challenging to control.
Yes
No
Sometimes
Have you a persistent unstable image or sense of self, or of who or what you believe in?
Yes
No
Sometimes
Do you have suspicious ideas, or paranoia ( believing that others are plotting to cause you harm)?
Yes
No
Sometimes
Do you experience under stress episodes that other people, or the situation is somewhat unreal
Yes
No
Sometimes
Now or in the past, engage in two or more self-damaging acts such as inappropriate sexual conduct, substance abuse, reckless driving, and binge eating
Yes
No
Sometimes
Do you engage in frantic efforts to avoid real or imagined abandonment by people who are close to you?
Yes
No
Sometimes
Questionnaire Psychological
Feel isolated and lonely?
Never
Occasionally
Sometimes
Often
Other
Other
Feel confined to the house more than you would like?
Never
Occasionally
Sometimes
Often
Other
Other
Feel weepy or tearful?
Never
Occasionally
Sometimes
Often
Other
Other
Feel angry or bitter?
Never
Occasionally
Sometimes
Often
Other
Other
Feel anxious?
Never
Occasionally
Sometimes
Often
Other
Other
Feel depressed?
Never
Occasionally
Sometimes
Often
Other
Other
Feel worried about your future?
Never
Occasionally
Sometimes
Often
Other
Other
Feel you had to conceal your MS from people?
Never
Occasionally
Sometimes
Often
Other
Other
Avoided situations which involve eating or drinking in public?
Never
Occasionally
Sometimes
Often
Other
Other
Feel embarrassed in public due to having MS?
Never
Occasionally
Sometimes
Often
Other
Other
Feel worried by other people’s reaction to you?
Never
Occasionally
Sometimes
Often
Other
Other
Have problems with your close personal relationships?
Never
Occasionally
Sometimes
Often
Other
Other
Lack support in the ways you need from your spouse or partner?
Do not have a partner or spouse
Never
Occasionally
Sometimes
Often
Other
Other
Lack support in the ways you need from your family or close friends?
Never
Occasionally
Sometimes
Often
Other
Other
Do you unexpectedly fall asleep during the day?
Never
Occasionally
Sometimes
Often
Other
Other
Do you feel people try and take away your independence by over sympathising in public
Never
Occasionally
Sometimes
Often
Other
Other
Feel your memory is bad?
Never
Occasionally
Sometimes
Often
Other
Other
Have distressing dreams or hallucinations?
Never
Occasionally
Sometimes
Often
Other
Other
Feel unable to communicate with people properly?
Never
Occasionally
Sometimes
Often
Other
Other
Feel ignored by people?
Never
Occasionally
Sometimes
Often
Other
Other
Do you feel shamed in public?
Never
Occasionally
Sometimes
Often
Other
Other
Do you feel shamed by friends or family?
Never
Occasionally
Sometimes
Often
Other
Other
Questionnaire Physical
Have difficulty doing the leisure activities which you would like to do?
Never
Occasionally
Sometimes
Often
Always or cannot do at all
Other
Other
Have difficulty with your speech?
Never
Occasionally
Sometimes
Often
Always or cannot do at all
Other
Other
Have painful muscle cramps or spasms?
Never
Occasionally
Sometimes
Often
Always or cannot do at all
Other
Other
Have aches and pains in your joints or body?
Never
Occasionally
Sometimes
Often
Always or cannot do at all
Other
Other
Feel unpleasantly hot or cold?
Never
Occasionally
Sometimes
Often
Always or cannot do at all
Other
Other
Had difficulty doing the leisure activities which you would like to do?
Never
Occasionally
Sometimes
Often
Always or cannot do at all
Other
Other
Had difficulty looking after your home, e.g. DIY, housework, cooking?
Never
Occasionally
Sometimes
Often
Always or cannot do at all
Other
Other
Had difficulty carrying bags of shopping?
Never
Occasionally
Sometimes
Often
Always or cannot do at all
Other
Other
Had problems walking half a mile?
Never
Occasionally
Sometimes
Often
Always or cannot do at all
Other
Other
Had problems walking 100 yards?
Never
Occasionally
Sometimes
Often
Always or cannot do at all
Other
Other
Had difficulty getting around in public?
Never
Have Carer Support to do
Occasionally
Sometimes
Often
Always or cannot do at all
Other
Other
Needed someone else to accompany you when you went out?
Never
With Carer Support only
Occasionally
Sometimes
Often
Always or cannot do at all
Other
Other
Felt frightened or worried about falling over in public?
Never
Occasionally
Sometimes
Often
Always or cannot do at all
Other
Other
Been confined to the house more than you would like?
Never
Occasionally
Sometimes
Often
Always or cannot do at all
Other
Other
Had difficulty washing yourself?
Never
Have Carer Support to do
Occasionally
Sometimes
Often
Always or cannot do at all
Other
Other
Had difficulty dressing yourself?
Never
Have Carer Support to do
Occasionally
Sometimes
Often
Always or cannot do at all
Other
Other
Had problems doing up buttons or shoe laces?
Never
With Carer Support to do
Occasionally
Sometimes
Often
Always or cannot do at all
Other
Other
Had problems writing clearly?
Never
Occasionally
Sometimes
Often
Always or cannot do at all
Other
Other
Had difficulty cutting up your food?
Never
Have Carer Support to do
Occasionally
Sometimes
Often
Always or cannot do at all
Other
Other
Had difficulty holding a drink without spilling it?
Never
Occasionally
Sometimes
Often
Always or cannot do at all
Other
Other
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