Neuropathic pain and MS

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New Member

Date Joined Aug 2011
Total Posts : 7
   Posted 8/1/2011 6:31 AM (GMT -6)   
People with MS can also suffer with neuropathic pain/neuralgia.
If you have neuropathic pain, we would be very interested to hear your thoughts about how you understand this pain.

I am a research student at UCL. We are researching how people make sense of neuropathic pain as it can be very difficult to understand. It is hoped this study will inform the services for people with this pain and how treatments are offered.

If you would like to take part then please use this link:

The study may seem complicated at times so please email me with any questions you have at all. My email is
You can take a break at any point during the task but please leave the web page open so your work so far is saved for you!

Your participation is extremely valuable to us. turn
Thank you for your time.

New Member

Date Joined Aug 2011
Total Posts : 7
   Posted 8/1/2011 6:33 AM (GMT -6)   
PS This post has been approved by Peter Waite!

New Member

Date Joined Aug 2011
Total Posts : 6
   Posted 9/5/2011 8:35 AM (GMT -6)   
Who is funding this study?
Will ALL the results of the study be used or just those that are considered "valid"?
What are the rules of the study?
Will the results be published in a major medical journal?
Will the results be published in a specific medical journal? What field?
Why are the subcategories limited? That limits my expression and thus the results. One of the questions includes two specifications. One I would say yes to and the other I would say no to. There is no category for unanswerable questions. That would sqew the results, forcing me to put an answer into a category that I didn't agree with.

Your questions mix answers for neuropathic and idiopathic or psychological pain. They are quite different. Neuopathic is by definition caused by biological causes. Neuro=nerve pathic=suffering. Although psychological treatment MAY provide palliative care it will not treat the cause of the problem.
Idiopathic or psychological pain would have to do with pain from an unknown or psychological cause such as that caused by psychosis, PSTD, personality malformation, personal sensitivity, etc. In such a case psychological treatment may be the treatment of choice.

The challenge of the medical doctor is to determine whether the pain is neuropathic or perhaps idiopathic or psychological. Most, I dare say, find neurology too challenging and psychology and 'easy out'. I think you will find a great many people with multiple sclerosis who have suffered a great deal because of delayed diagnosis due to misinformed or disinterested doctors or doctors whose education and/or experience is limited, or doctors who are trying too hard to please administrators or insurance companies to take the necessary time to get to the root of the problem who quickly brush off neurological pain as psychological pain. People with undiagnosed multiple sclerosis suffer emotionally, physically and financially because of the delayed process of diagnosis and incorrect diagnosis. Especially those with primary progressive multiple sclerosis which is very difficult to diagnose. Because it is a disease of exclusion, many, many tests (which are negative) are undergone before a diagnosis can be given. This is costly; financially, emotionally and physically. Often the patient feels like giving doesn't the physician.

The field of psychology is quite subjective and incorrect diagnosis can be made on the basis of what the psychologist has been taught and experienced because that is ALL she/he knows. For instance...difficulty sleeping or staying asleep is diagnosed differently by a psychologist, who often starts by addressing sleep hygiene and methodology, than would be by neurologist who knows that sleep centers are controlled by the nerve fibers from medulla to thalamus which could be damaged by lesions or atrophy--even some that might not show up on an MRI.

Many people with multiple sclerosis are relieved to finally get a diagnosis because they are so grieved that they have not been taken seriously for so long and can't get help. They often eventually begin to wonder if they really are psychological cases because they are told so too often by doctors and family alike only to find out they really DO have multiple sclerosis. So as you can see, how this information is going to be used is very important to us.

Post Edited (Shiela101) : 9/5/2011 9:11:33 AM (GMT-6)

New Member

Date Joined Aug 2011
Total Posts : 7
   Posted 9/6/2011 5:56 AM (GMT -6)   
Who is funding this study? I am studying at UCL and the study is in collaboration with UCL and the NHS.
Will ALL the results of the study be used or just those that are considered "valid"? I plan to use all of the results in the analysis.
What are the rules of the study? I am not sure which rules are you referring to? The only rules in my mind are that only people with neuropathic pain or people who work with people with neuropathic pain should take part.
Will the results be published in a major medical journal? I hope to publish the results in a peer reviewed journal.
Will the results be published in a specific medical journal? What field? I am not sure which journal I will be able to publish in but can keep you updated with this. The higher impact factor of the journal the better turn
Why are the subcategories limited? This is the nature of Q-methodology which is the methodology I am using. The categories are limited to enable the anaylsis to compare each participants ways of sorting the statements to all other participanats sorts directly. This is part and parcel of the method which is useful in order to get a sense of the views of a group of people overall rather than on an individual basis.
Thank you for sharing your thoughts below they are very useful. I will update you with the results and whether I have been successful in publishing my study. Do let me know if you have anymore queries
All the best
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