Ended up a hogpog. Find the actual ?? here ***

[twopack]

I was just reading through another discussion here about how many people we each personally know with MS.  It seems to be disproportionately high to the reported number of cases.

That made me reflect on how my latest neuro told me I probably had MS "although MS is over-diagnosed" (she reneged two weeks later and suggested a second opinion rather than start treatment).

The sleep specialist I saw yesterday suggested the group I just saw does a "million dollar work-up" and then doesn't give a diagnosis.  Yet, he also suggested MS is over-diagnosed.

I remember these same comments being made about PMS and fibromyalgia and IBS and other conditions that just don't have definitive testing for diagnosis.

***So who reports the number of MS patients and which ones have symptoms and/or signs?  It seems to me that now that we have the MRI and LP and EP tests, it's harder than ever to get a diagnosis.  ***Don't they (whoever they are) create somewhat of a vicious circle when stating things like 95% of MS patients will have a positive LP?  Well, if you can't get diagnosed without a positive LP, then that 5% must be the patients grandfathered in from before this particular standard.  

I'm probably just too simple.  I do understand the care needed before handing down a serious diagnosis and the need to use expensive treatment to the best advantage. (Maybe high demand would bring the price down?)  But really, I don't want to beg for a MS diagnosis.  I just want to know what is going on and if it is treatable.  It seems right now I'm on a MS or nothing track.  In the end, I guess I would just feel better about myself if I had some validation of what my body has done to me over the years.

~Mary

[Lulu54]

I'm wondering where the 95% positive LP figure comes from?  That is much higher than is commonly accepted - lately I've read that the lp has a 50/50 chance of helping with an MS dx.  

Whoever told you the LP was the gold standard, was not up on the facts.  O-bands in the CSF can occur because of other disease processes besides MS.  If that came from your neuro, I would run the other way... fast!  If it was your PCP, I would attribute it to ignorance about the diagnosis process.    

The MRI's should make the process easier - but it gives doctors that excuse when the pictures don't match the clinical history.  But I would guess overall the MRI's help with the process.  

MS is overdiagnosed?  That is a horrible twist from both of these doctors and again, I would not use their services.  Please find someone who understands the complexities of this disease and the diagnostic process.  I am guessing that no MS neurologist would say something so outlandish.

I'm dumbfounded,
Lulu

[twopack]

It seems to me that now that we have the MRI and LP and EP tests, it's harder than ever to get a diagnosis.  

For example: When we're told things like 95% of MS patients will have a positive LP so it's very difficult to be diagnosed without a positive LP, doesn't that just perpetuate those (maybe false) numbers?

---Yes, I had a negative LP after being told it was the "gold standard".---

[wadeheather]

Good  points.  I don't know who "they" are either.  I really have come to a point in my limbo land that I have finally found a neuro that cares. I have also realized that I - for now at least - am still functional. I wonder sometimes if I really notice more "odd" things that are normal or if I'm just "odd."  But, regardless, if you can find a doc you trust then why worry about what the dx actually is? "They" are the professionals.

I feel your pain as I have been in limbo and a chronic internet dx explorer myself. It's not fun. At some point, though, we have to learn how to breathe without a title.

H

[twopack]

What is a hogpog girl???

That would be hodge podge, but I don't even know what that is.  LOL