Has anyone been there?

[Jacquee123]

I am in limbo land with a MS diagnosis.  My GP thinks it is MS, the neuro does not because the spots on my mri have not changed  (there are about 15 of them).  My LP was normal with the exception of high % of mononuclear cells.  No lymes.  ANA was positive at first but is now negative. I still have symptoms from my first "CIS".  I have not had another attack but have been dealing with MS like symptoms and questioned if I was having an attack 2 times before.  I am confused becasue the neuro told me that because I didn't have "bands" I couldn't have MS.   My GP is going to send me to John Hopkins MS specialist.  Has anyone been there?  

[Quixotic1]

Hi, and welcome to the forum!  AT thirty with neurological symptoms and an extremely positive MRI you should be much closer to a diagnosis.  Your current neuro is sub-par, to say the very least.  Clearly not a doc that knows much about MS or is current on his reading.

So you have had one attack - the CIS.  If you had 15 lesions at that time and the work up to rule out the MS mimics was complete, then you should have been offered an MS med, one of the Disease Modifying Drugs, because your chances of going on to develop MS were in excess of 85% at that time.

Here are the two points on which your neuro is sorely mistaken - unforgiveable in my opinion from a doctor that is pretending to know how to diagnose MS.

1)   There is NO requirement in MS for the lesions on the MRI to change within a certain length of time.  There is strong documentation in the literature of MRIs that have remained stable for many, many years, even a decade or more.  Yes, the recommendation is to repeat the MRI in 3 to 6 months to look for increase in lesions.  BUT, a change on a repeat MRI is only helpful if there is one.  That is strong evidence FOR the diagnosis of MS.  The opposite is NOT true.  If there is no change then it is NOT evidence against MS.  It just is no more information.  I have had no change in my MRIs for more than 5 years, yet my disease is progressing and there is no question of my diagnosis.

2)   Boy, I get tired of repeating this one.  There is NO requirement that the MRI be positive in order to make the diagnosis of MS.  The test for O-Bands is not as reliable as most neurologists think, unless it is being done in one of the major labs which specialize in running the test.  A recent survey study done looking at 228 random labs of different types (hospital, private, clinic, etc) show that only 27% of all labs are running the test correctly - yes, just about 1 in 4 labs do the test for O-Bands correctly.

The McDonald Criteria do not require that the LP be positive.

In people with RRMS (the most common type) at least 10% have negative LPs into far into their disease.

In people with PPMS (Primary Progressive MS) a whopping 40% are negative for O-Bands.

So, where do any neuros get off claiming that MS can't be diagnosed with a positive LP.

You desperately need a new neuro.  The one you are seeing is incompetent with regard to how to diagnose MS.

Several people here have been to Johns Hopkins.  Some had good experiences and some not so good.  I hope they speak up.

Welcome again.  Would you tell us your story and what your symptoms have been?

Quix, MD

[steph74]

I've been in limbo for 8 years...  Hope you're not here that long.  I have a clinical exam, and course of disease progression, that looks exactly like MS according to my MS specialist.  Yet, I have no spots on my MRI, thus, "no MS."  

If you have 15 lesions and no dx, I'd find a new neuro.

Good luck.

Stephanie

[RedFlame]

Its going to take time but get a new neuro.  If it is MS, you need to stop the progression.

Hugs,  Red

[moose28]

I would definately recommend going to a different neuro.
Good luck!

[jujuminx]

Everyone one of us here has a different story but most have many challenges on the way to a diagnosis.

I am not dx yet but awaiting spinal MRI results (early next week).  No LP yet but that is a probablity. Several head MRI's negative.  This is my third "episode" in 20 yrs.  Unfortunately I think it is not unusual for doctors to disagree.

So sorry you are going through this at such a young age.  I have not gone to John Hopkins but maybe someone else has and can give you some insight.

Good luck!
Julie

[Jacquee123]

Oh, I should also say that I am only 30.