Went from MS to Limboland....geez

[kshloss]

So in November of 2012 Dr looked at MRI and results of LP and wanted me to start on medication. Me, being a big baby about needles, didn't like the injection option & asked about LDN so he referred me to an MS Specialist in Peoria. Had my appt w/him last week and he is not convinced I have MS. So another round of MRIs and wait for my next appt w/him. I see there are others on this site with similar stories, how difficult is it to diagnose MS accurately? I know there are a lot of things that mimic MS but I thought that was the reason for the LP. What a confusing trip this is going to be!

[JerryD]

I saw about 4 neurologists for a confirmation of my MS. No LP. I have read on this site that the LP must be coupled with a blood test done at the same time. I also read that several people found that the lab 'lost' their blood tests that accompanied the LP. I would question my doctor about this. And tell the doctor that you will only give him 'one shot' at this LP and blood test combo. Do all of the 'homework' you can do. Good luck

[SNOOPY]

kshloss:

how difficult is it to diagnose MS accurately?

For some a MS diagnosis come easy for others it's a longer process. Unfortunately, there is no definitive test for MS.

The LP can help support a diagnosis of MS but does not confirm a diagnosis of MS. The LP and positive results can be due to other conditions as well as MS.

Information about a LP as well as what it can indicate:
http://www.nlm.nih.gov/medlineplus/e...cle/003428.htm

Unfortunately, it is not that uncommon for people receive a MS diagnosis, get un-diagnosed, re-diagnosed, ect. It's really too bad more isn't known about this disease which could possibly make diagnosis easier.

[MSer102]

The funny thing is that the MS criteria keep getting updated to make diagnosing MS easier. That's great for people who obviously meet the criteria. Not so great for people who don't and really frustrating for people who have test results that can be interpreted different ways depending on how you look at it. Reminds me of the bank robbery scene in Take the Money and Run where the tellers can't read the holdup note cuz the handwriting isn't clear and the robber has to explain it to them. Except our bodies can't always just explain what's going on. So some people get stuck between test results that aren't clear enough to read and doctors who sometimes just don't know how to read.

[SNOOPY]

The funny thing is that the MS criteria keep getting updated to make diagnosing MS easier.

Personally, I feel there needs to be a better understanding of this disease before diagnosing can get "easier."

Alot of the criteria focuses on the MRI, but that also has it's downside...

From the National Multiple Sclerosis Society:
Although magnetic resonance imaging (MRI) has greatly enhanced the diagnostic process since the first diagnostic criteria were introduced by Schumacher in 1965, it has also contributed significantly to the mis-diagnosis of MS (Ratchford & Calabresi, 2008).

http://www.nationalmssociety.org/ms-...sis/index.aspx

MSer102:

That's great for people who obviously meet the criteria.

I was diagnosed under a different criteria (Poser) and I didn't meet the criteria when I was diagnosed, but I was still diagnosed. Any doubts were put to rest one year later when I had my second severe exacerbation.

[MSer102]

From the National Multiple Sclerosis Society:
Although magnetic resonance imaging (MRI) has greatly enhanced the diagnostic process since the first diagnostic criteria were introduced by Schumacher in 1965, it has also contributed significantly to the mis-diagnosis of MS (Ratchford & Calabresi, 2008).

The article that talks about being misdiagnosed is from 2008 and the criteria were revised after that in 2010 to make diagnosis "simpler". So it sounds like the 2010 revision was supposed to fix that by keeping people from getting misdiagnosed because the doctors didn't look at enough information first.

But like I was talking about before the new criteria are only simpler for people who obviously meet them. The doctors who came up with the new criteria said that they don't apply to people who don't meet them so we're kind of back where we started where the criteria aren't simpler for people who don't meet them. That's what I think is so funny about it. It's better - but only for the people its better for. But I think its helpful for people who keep thinking they've had mysterious invisible MS for 30 years even tho nothing ever shows up on an MRI and all the test results are normal.

The other thing the doctors said is that it's a requirement that a person's signs and symptoms are interpreted correctly. Well duh! That's what I meant about some doctors not knowing how to read the test results or know what somebody's symptoms mean and how frustrating that is cuz you don't know if what you have isn't showing up on tests or if the doctors just don't know what it means.

And I read something not too long ago that talked about how different people would be or wouldn't be diagnosed with MS depending on what criteria were used. So I think that maybe explains why people can get diagnosed and undiagnosed depending on who is doing it.

[kshloss]

the LP I had was the worst part...well I guess it wasn't the LP per se but I NEVER want to have another headache like the one I got afterward again as long as I live. I guess I am thankful I am now seeing a Dr that specializes in MS and am hoping for the best. Que sera sera; if it ends up being MS that is OK and I will live with it and do my best but being stuck in limboland is the pits.

Thanks for the input!