Does the EDSS have a lot of value?

[Corriel]

Hi folks, got in to see my physiatrist for my "annual" appointment which tends to happen only every 18-19 months due to their waiting list.

Anyway, she was as informative and attentive as always but she ordered a lot of stuff that kind of threw me. I need to see PT for a new balance assessment, oximetry testing followed by a full sleep study and several assessments with an OT for my memory and concentration issues. She is also referring me for urodynamics testing.

She gave me a prescription for Fampyra which will require a special authorization for my insurance so she had to do a full EDSS evaluation.

When I had the last evaluation done in July 2013 I was a 2 on the scale. Based on her evaluation this morning, I am now a 5. The physiatrist didn't seem overly concerned, and I was expecting around a 3 or 3.5 but the 5 came out of left field and seems to stick out to me and I am not sure how I feel about today's level.

Is the scale typically a good tool to measure progression/disability or is it used more by the bureaucrats of the healthcare system to "label" a complicated disease?

Thanks!

Corrie

[HVAC]

It is important to ask nicely for the neurologist to explain the tests he is doing. Mine is happy to do it. It is just it is so automatic to them they forget to explain to the patient. It is true you can have a different score on a different day.

Alex

[Corriel]

Thanks very much ladies!

Alex, I'm sure my neuro must be using a form of it without actually doing the full exam since he has to put it on the special auth form for my DMD but he has never told me where I fall on the scale.

Karen, thanks for sharing the article. That was definitely an interesting read. As part of the exam I had to do the timed 25 ft walk. Kind of depressing, isn't it?

Karry, I remember those assessments that you had at the rehab hospital. Definitely seems similar to the testing I did. So far this physiatrist is the only one who ever mentions the scale to me and she's very open about each rating she gives to get me to the overall rating. I was just bummed that I have moved up the scale so quickly.

Now I get to gear up for the upcoming sleep study and urodynamics testing. Can't say I am looking forward to either.

Thanks again gals!

Corrie

[karryon55]

I had some sort of test like the EDSS when I went into a rehab hospital earlier this year & I can say there are definitely faults with this sort of testing for me anyway. I had a PT do most of it but not all on my first day and then the day I left I had an assistant do it again.

The first problem for me was the day they did it first I had been forced into bed rest for 12 days so I hadn't moved much and they never considered what role my rheumatoid arthritis would play in my mobility due to the stiffness that had occurred. So if they had left it for a day or two to allow me to get my joints moving better I'm sure things would have looked differently.

My second issue was the staff member who did the follow up assessment the day I left did not ask me to do what the PT had & is not qualified. In fact I was continually asked if this was how the PT had done it previously and I was saying no it's very different. So apparently whatever test they did I had dramatically changed in some areas but even me as a lay person could see how inaccurate it was.

I'm not sure what test I did but I do know the results were innacurate. This was then the reference for my most recent assessment done by a PT who was using that as a guide. I definitely see faults in this kind of testing but I may not have had the EDSS so I could be wrong. I just thought I would explain what happened to me incase it's helpful.

Take Care,

Karry.

[Artanis12]

I've been wondering the same thing myself for quite awhile.  I've read several articles about the EDSS, that point to its flaws - not the least of which is the rater him or herself.  (For instance, you do NOT want to hear the way my neuro had me do a 25 ft timed walk. Sloppy to say the least)

This might help.  I found it useful.  And yes, it sounds as if your suspicion that it is used nowadays when there could be better standards, is due in large part because it IS so closely tied to determinations of disability.
http://multiple-sclerosis-research.blogspot.com/2013/08/clinic-speak-what-is-edss.html

[HVAC]

I know neurologists use it to measure progression of MS. It is a tool like any other.

Alex