Update on research analysis

I've been keeping myself busy over the last few weeks. Back in 2013 I had downloaded all of the papers on the PubMed database which referenced HSP, but I hadn't really done anything with them. I've now undertaken two passes through the papers getting ready to put a more in depth analysis up on a new page.

I've limited myself to papers with abstracts - so I've got some better information on what information the paper contains, there are just over 1000 of those.

My first pass was to look through the papers and give them a "usefulness" rank. Papers which I thought would be very useful were given the rank of 10, with smaller numbers for papers which were less relevant. My "default" rank for papers on HSP which aren't obviously useful is 4, which allowed me to score lower than this for papers which mention HSP in passing rather than being specifically about HSP (or some aspect of this).

My second pass has been to read all of the abstracts again and divide the papers into categories. Evan Reid had indicated at the AGM in the summer that HSP research could be divided up into three zones, and I wanted to see what these zones looked like. I began with the papers which I had ranked 10, and then worked down the list until I got to rank 4, so there are some 800 papers which I've done this for.

This post is my initial results. I used the set of results which I had previously downloaded, so this includes papers up to some point in 2013.

When I came to go through the papers and categorise them it was obvious that some of my rankings may need adjusting, and that by the time I got a reasonable way through the process my initial thoughts on what the categories should include have changed. Basically, I'm just saying that this is a work in progress.

This is the table of topics:

Topic	Earliest	Latest	Papers
Treatments	1984	2012	20
Clinical studies	1980	2012	93
Clinical and Genetic studies	1981	2013	51
Genetic studies	1996	2012	67
Genetic identification	1983	2013	241
Assessment tools	1975	2013	25
Reviews	1953	2013	34
Models	1998	2013	62
Biology	1976	2013	100
Prevalence	1985	2009	11
Multi-illness studies	1975	2013	113
Uncategorised	1946	2013	376

I've used the "biology" category as a bit of "not sure" category at times, so there may be a few papers in this topic which are not strictly to do with the biology of HSP. Other papers cover a few different topics, so there will be many papers which could easily be put into different categories.

I suspect that readers would be most interested in the treatment category. These papers comprise:

9 papers on Baclofen
3 papers on Botox
2 papers on Levodopa
1 paper each for: Gabapentin, Electrical stimulation, Progabide, Methylphenidate and Ranibizumab
There was one further paper which looked generally at matching drugs to diseases based on genetic analysis.

In addition to some of these papers, my most relevant papers covered:
Depression, bladder function, cognitive performance, sensory function, continence and the prevalence of HSP. All in all there are about 30 papers which I thought would be most useful.

This is how all of those categories look on a graph:

Next steps:

Create a page on this blog to hold such information
Add papers published since end of last trawl
Classify papers with ranks of 3 and below
Review classification and topic designations

Ultimately I'm aiming to draw out analysis for different aspect of HSP, but I'm a way off that yet.

A trip to the bowel doctor

Today I went to see the colorectal surgery team, so thats another part of the health system ticked off. As a reminder, this was suggested by the HSP specialist as I'd been experiencing bowel urgency problems, and this is not viewed as a common HSP symptom.

So, I wasnt sure what to expect on this visit, could it be about seeing if we could rule out other things, or would it be about management of the situation. It turned out to be a bit of both.

In the ruling out of other things front: I was examined, and things are not quite as expected, so I'll have a further appointment to have some nerve tests done, and then we'll hopefully know a bit more. The specialist I saw has not had any previous experience with HSP.

here's a description of things I've learnt about the bowel today:

Your bowel is controlled by two sphincter muscles, an inner one and an outer one. The inner one stays tight all of the time, and its main job is to prevent leakage. This muscle is not one which you have control over. The outer sphincter also stays closed all the time, but you control over this one, which allows you to choose when you want to go.

There are two types of incontinence - one where you know that you've got a problem - and the issue is getting to the toilet in time, and another when you dont know you've got a problem - and you end up with a mess to deal with.

On the management front:

Management strategy 1: It is possible to re-train the muscles for some people. But the general thought was that as the correct messages are likely as not failing to get through, this strategy may not work.

Management strategy 2: Use Loperamide / Imodium. Some people are on this all the time. This can help by making your stool/faeces/feces firmer, and therefore giving a bit more time to get to the toilet. However, as my urgency issue is not predictable this makes it difficult to use pro-actively. It could be taken when loose stools are noticed, or taken when it is known that you may have difficulty finding a toilet in time.

Management strategy 3: This was mentioned in passing, and not appropriate for me now. You can get a home colonic irrigation kit. Some people will use this 2-3 times a week, and others will use this after they have been once, which then makes you empty for a while, meaning that you cant have any incidents.

These are the management strategies which were mentioned, suggesting that there are some more. Perhaps I'll find out more at my next appointment. The one which springs to mind is checking that my diet helps the situation rather than hinders it.

So, in conclusion, it looks like I'll need to go to the chemist and get some imodium to add to my collection of tablets. I'll need to understand how quickly this works and how long it lasts.