Am I making a mistake????

[risnerrose]

Here is how it rolls . . . .

2005  symptoms led to an MRI (showing atypical lesions)
2006  LP (elevated IGG index, no O-bands) . . . diagnosed with MS
2010  relocated, new neuro
2011  I've had several MRI's over the past years, but have never had enhancing lesions or changes in existing lesions.

I have had some symptoms over the years that are textbook MS symptoms, and I've had some transcient atypical symptoms.  

My new neuro questions my diagnosis (as do I).  He scheduled a new series of MRI's.  If there are no changes, I feel certain he will dismiss my diagnosis.  He has scheduled an EMG to investigate my right side weakness (including some muscle atrophy).  

I'm rather confused now.  I don't want a wrong diagnosis, but I also don't want to head down this road again.  Could a single attack on my CNS cause lesions, and also cause an elevated IGG index 1 1/2 years later?  

Sherry

[twopack]

Oh yes, a single test for MS would be wonderful UNLESS it is anything less than 100% sensitive and accurate.  Otherwise I fear we will have nothing more than yet another tool doctors will use to exclude patients from care options.  Look at Lyme.

Mary

[metalbender]

Thanks Bob...I'm thinking about getting an MS specialist...My neurolgist is a great guy and is trying to move through any treatment quickly...As for excluding any other possibilites, they took 15 vials of blood at the hospital and the diseases (plus more) that you mentioned came back negative...Can my neurologist be an ms specialist too? I talked with him on the phone this week and have an appointment with him in a couple weeks...

Michael

[COBOB]

A result of 5 lesions on the brain would most likely not include the spine.  MRIs of the brain, C-Spine and T-Spine or typically ordered separately and done at the same time.  That is because insurance companies are billed and payed by the "body part."

IGG Synth rate shows that your brain is producing antibodies in the CSF.

The OC Bands in CSF shows that your brain is producing unique antibodies (more than 5 types) not seen in your blood.  This is an indication that your central nervous system is having a unique immune response and generating its own antibodies that the rest of your body is not aware of.  Greater than 5 OC Bands would even get the attention of the folks at Mayo and they are a tough sell.

In general terms, all of these things combined point to a continuing central nervous system disease which is causing a unique immune response within the CNS.  If there is no other cause that can be identified (Lyme's, ADEM, Encephalitis, etc.) you kind of get left with just one thing.  I'm not sure what you symptoms are or what your physical exam showed, but "Multiple Sclerosis is a disease of the central nervous system and is a diagnosis of exclusion."  

I guessing this is what your doctor has told you.  If you are not seeing an MS Specialist, I would recommend that you should find one.  

Bob (not a doctor and just my opinion.)

[metalbender]

Hey Bob,

It seems to me you understand terminology and what all that test data means...I don't...When I went to the hospital for optic neuritis, my mri is why they admitted me..My regular doctor called and told me of 5 lesions on the brain....Does this include spine lesions on this test?

Also, my lumbar puncture data is very confusing...Since I am still in denial about what I have been diagnosed with, I want all copies of data from any test given to me...I have 4 pages of data from my lumbar puncture and it makes no sense to me, but the doctor circled key data points....1st one is what is Igg synthesis rate?...It is circled +7.0(H)

2nd one is oligoclonal bands,csf: "Patient's CSF contains >5 well defined gamma restriction bands that are not present in the patient's corresponding serum sample. These bands indicate abnormal synthesis of gammaglobulins in the CNS and is supportive evidence of multiple sclerosis..."   Now, what are these oligoclonal bands and what does all this mean besides being bad?

Michael

[supermum_ms]

Just to throw another thought into the mix, who can truely say its not MS, still?

At the time of dx you had enough clinical evidence to meet the criteria to be dx with MS and you were clear of MS mimics, which is still true todate. Even if you had been totally sx free for years and years or only experienced a worsening of old sx but nothing new or no changes on MRI but changes to your clinical sx, it still wont change the fact you met the criteria for a dx of MS.

Not sure that made sense (lol) what i'm trying to say is to forget about what the MRI is showing or not showing and follow what you clinical sx are showing, if your clinical sx are getting worse or multiplying, then it doesn't matter if the MRI isn't picking up lesions because your body is and thats sometimes screaming long before the lesion is visible on MRI!

Before i'd accept the dx being taken away, i'd probably ask "if i once met the diagnostic criteria for MS and no other disease has been diagnosed to other wise account for my clinical symptoms. Would that mean if I no longer have MS, that I am actually cured of MS?"

Food for thought..........JJ

[COBOB]

A single assault could cause IGG synthesis.  There are some diseases like ADEM that are post viral and can cause a single isolated episode that looks very much like MS.  It typically resolves and the damaged areas remyelinate.  

Visual symptoms scream for a VEP test to be done.  An abnormal VEP and Elevated IGG Synthesis really supports MS as a diagnosis.  The three major tests in the McDonald Criteria are the MRI, the Evoked Potentials and the Lumbar Puncture.  

In MS terms, many PwMS get weird transient neurological symptoms.  Twitching, blephrospasm, etc.   Doctors are typically looking for the things that last more than 24 hours.  At least that has been my experience.  They treat my spasticity, but are more impressed by the Trigeminal Neuralgia (points to a brain stem lesion) and my Optic Neuritis (points to a cerebral lesion).  They have dissemination in  space and time from the symptoms and the MRI and an abnormal VEP.  I had a normal lumbar puncture (1 in 10 PwMS do.)

Hope that helps.

Bob

[risnerrose]

Thank you for the link.  This is how I understood the info (please correct me if I am wrong):  An elevated IgG index (18 months after lesions were found on an MRI) would indicate recent CNS activity . . .  and supports "dissemination in time".

[sllowe]

Gotcha. Yes, makes perfect sens, and I'm grateful for the re-cap because I forget so much.

Check out this older Doc Q post - think it will shed some light for you in regard to the O-banding and time, etc.

http://www.medhelp.org/posts/Multiple-Sclerosis-MS/Question-about-wording-of-CSF-Results/show/860183

-Shell

[risnerrose]

Although my MRI's have remained unchanged, my symptoms have not.  My scariest relapse occurred a year after my first MRI, but the repeat MRI showed no new lesions; of course, that MRI was weeks (maybe even a couple of months) after the attack had resolved.  I was diagnosed with RRMS only after the LP, so CIS has never even been mentioned.  I'm just wondering how long antibodies remain in the spinal fluid, if there is a single assault (virus, etc.)?  Does that make sense?

I had the MRI yesterday and have an EMG scheduled for August.  I hope to hear from the neuro before week's end.  If the MRI shows anything, my confusion is over and the diagnosis sticks.  If the MRI is unchanged . . . the trip starts again.  Although he has not mentioned an LP, I thought I might bring it up . . . but only if it would provide an answer.

I am okay with not having MS . . . but I am not okay with limbo land.

Stay cool,

Sherry

[sllowe]

Hi Rose!

Nice to see you! I'm sorry this is ongoing for you.

I think you already know this because your a veteran around here, but yes, one CIS can cause damage, and too you could have transient, and/or atypical symptoms from this existing damage.

Before re-considering the LP, if I were you, I would ask the doc for some reasoning in that regard, i.e., if positive for O-bands the dx sticks? And, none - he takes it away? That way you know how this doc operates.

I feel the neuro of the past served you right by treating CIS. Since there has been no attack since then, you'll not move into the RRMS. But, least you did treat it, albeit it for only one year. Beta is well known for it's positive results, even though only used for one year.

Sorry you have to re-look into this. I sure hope you have a good neuro there. And, there is not some denial going on here  - not saying that's the case. Just know that when I've had good days, the thought sure has crossed my mind. Heck, I even visited a neurosurgeion to see if my neck problems caused the lesions.  They didn't. But, least that simmered my doubt. I could then move onto treating both problems.

When do you go back?
-Shell

[risnerrose]

Mary . . . wouldn't it simplify things, if there was a single test for MS?

Bob . . . one more question . . . would there be any benefit in repeating the LP?

[risnerrose]

I have been a Quix fan for years now . . . we've even "roasted" a few neuros together :)  The forum has grown so, that it now overwhelms me . . . so I lurk more than I participate.  I will definitely look into the health page.  Thank you!

Bob,  I was on Betaseron for a year and have been off of DMDs for over a year now.  My "stable" lesion load is most likely not a result of the DMD.  I hope you can answer a few questions for me:  

1.  If I've had a single assault on my CNS that left lesions . . . would the IGG remain elevated a year later?  (I don't believe I've had a single assault . . .just saying.)  

2.  The transcient symptoms include right-side paralytic episodes that last a few minutes and then go away, and may reapeat several times for up to a week.  They leave my right leg and arm very weak.  I've also had sudden clouding of my vision, which resolves quickly but may remain slightly "out of focus" for days.  Do these symptoms point away from MS?

BTW . . . I have had negative results for all of the mimics, at least twice over the past years.

Any information is appreciated and arms me for the weeks to come,

Sherry

[twopack]

Well said Bob.
Sadly Sherry, you will more than one kindred soul here who has done battle on this front.

Mary

[Sumanadevii]

Oppps..so does Bob but I didn't know he was around....lol

What he says, too.

[COBOB]

The question is: Are you on a DMD?  If you are one one of the CRAB drugs and they have stopped the disease progression, great.  Are you willing to risk a resurgence of symptoms if you stop the DMD?  

An EMG may be a good idea.  If it is normal, that will point to a CNS cause.  If you can;t find another CNS cause, then MS is a likely diagnosis.  Most of us have diagnoses of "Probable MS" or "Clinically Definite MS."  It really can not be proven until they can remove the brain, dissect it, and examine it under a microscope.  MRI can only see large lesions.  

IGG Index means that your brain was making antibodies to something.  Lesions mean something was going on.  Have they ruled out Lyme's and the other mimics?  My view is that if I have symptoms, I want to (at a minimum) treat the symptoms.  If I need to have a diagnosis to treat the symptoms, MS is as good as any other (maybe better, since it is treatable.)

I don't want MS, but at least my ON, TN, spasticity and muscle weakness has a name (and that name is not something worse like ALS.)  Sorry.  Just how I feel.  MS I can live with.  If you have symptoms, I'd want a new diagnosis before he throws you back into limbo-land.  Some other Doctor, based on his/her clinical experience, felt MS was the most reasonable diagnosis.  If this doctor wants to say the previous doctor was incorrect, then what is the "new" diagnosis?

Bob

[Sumanadevii]

Go here and read the post by Quix.  She is a retired pediatrician and has MS...She is also a moderator on the board.  She knows her stuff.

http://www.medhelp.org/posts/Multiple-Sclerosis/PPMS---IgG/show/315950