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Thinking Out Loud

Dec 21, 2009 - 6 comments

I don't really know why I'm writing this right now and I have no idea why I'm still awake. I guess I'm getting nervous about my appointment. I'm nervous about being let down...That's just like me..the glass is always half empty, never half full. It's not that way when it comes to my life or living, just with my health issues and finding out the answers to what the heck is going on. I guess I expect the worse (no answers) so I'm never disappointed. I guess this journey has taken it's toll on me in a negative sense.

I've gotten so many mixed messages through this whole process it's a wonder I can even comprehend anything by now. My GP says MS. My opthamologist says MS. I've had radiologists say early MS and a internist too, but not one neuro. It seems I lack in some of the evidence department. Sure, I have abnormal neuro exams, loads of symptoms that fit, all the mimics have been eliminated, but not one lesion that they want to consider as being MSish. I have 4-5 lesions..but they are non specific...they could have came from anything, they say. I don't even have one positive evoke potentials test, even though it's been a good 2 years since an SSEP and I probably should have another one. At this point I don't know what I have. I don't know what I believe..I just want a name..and medication..that's all.

I've read everything I could about autoimmune diseases and MS, just searching for something that might fit. I want to have a AH HA moment and solve the mystery, but nothing does. MS does seem to fit but even that is different in some ways. The only thing I have problems understanding is relapse and remitting and the classification of all of it.

When I first started out with symptoms 2 years ago, I felt like I went out of it..completely. I felt like myself again. Back to normal. I don't have that feeling anymore and I haven't had that feeling for a long time. I think it was the first 6 months of having symptoms...then they stayed for good. I don't feel like I truly go out. Yes, my symptoms feel worse at times, 10 times worse,  and I'll pack on new ones that will come and go, and certain symptoms never leave. So what does that mean?

If my GP is correct, and I do have MS, then what classification would I fit under? If not MS then what? I guess I really shouldn't think about those things until I have to, but the thought is still in the back of my mind.

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751951 tn?1406632863
by PastorDan, Dec 21, 2009
I don't have a clue what the criteria might be for drawing a distinction between RRMS and SPMS.  How long is a relapse before it is called progression, if there's not a remission?  I suspect Mama Quizzles has as much info on this as anyone else, and it's still early in the day out her way.

195469 tn?1388322888
by Heather3418, Dec 21, 2009

I started out having RRMS and as of two years ago, it became more and more difficult, to tell when I was having relapses and remissions.  My symptoms are constant now, 14 years after diagnosis.  I only have an increase in severity of those symptoms, if I am over-tired, am under alot of stress, have an infection or get over-heated.  Then they return to "my normal."

If a doctor asked me today, when was the last time you had a relapse, I honestly would not be able to tell them.  I really don't know.  Is this Secondary Progressive MS?  You would think I would know after all these years of gathering information about MS.

Maybe our Mama Quix could help us with this....


279234 tn?1363105249
by slightlybroken, Dec 21, 2009
I'm just foggy on the whole issue too when it comes to the classification part. I understand the concept when it comes to the MRI and etc. when DX other classifications of least I think so, but when it comes to RRMS vs PPMS vs RPMS etc..I'm a little confused when there is lacking evidence on MRI scan. It seems that is the only way they will DX some of the other forms..maybe. When do they say it's something other than RRMS when you never have or feel like you have a remission?

I have so much trouble walking, and with spasticity it's not even funny. The spasm/spasticity is my main issue. My balance has gotten worse..but all my issues are a slow deterioration. It's like I keep some symptoms and they slowly get worse (getting worse from year to year, but at a slow steady pace). I'll add some symptoms and they come and go as they please, and then there is some symptoms that visit once every 6 months or so.

I just don't understand how they say there is no evidence of something there, when I can't even move my toes half the time on the left side. They won't bend upward for me all the way, nor will they bend down all they way. Some toes won't even respond. My neuro performed and EMG in the office last time I was in, because of the extreme weakness in the left side. She said everything was fine. She even said that my numbers on the EMG was not even borderline. She said it has to be coming from the central nervous system, not the peripheral.

I'm just confused...Oh well..maybe I shouldn't think so hard. I'll cross that bridge when I get to it.

147426 tn?1317265632
by Quixotic1, Dec 21, 2009
Did I hear my name???

You are all right and alright!  It can be a fuzzy line.  If someone is still having relapses, they look for a lack or improvement or even a lack of stabilization between the bouts of worsening and new symptoms.  So, even though, they are still having relapses they are not having "remissions".  This means that between bouts of worse symptoms the person continues to slowly lose ground.  This loss of ground is always more than just sensory.  As someone enters SPMS their muscle strength, spacticity, balance,  gait worsens and often other systems like digestive, urinary, breathing start declining, too.  The vision or hearing may gradually worsen.

That group is a subset of SPMS called, I think, Relapsing SPMS.  And the docs will often continue the DMDs and/or steroids because the relapsing implies that they are still having bouts of immune inflammation.

If the person has stopped having any discernible relapses, but just sees progressive disability in various areas then it is clearer to call SPMS.

Heather you are talking about the temporary worsening of symptoms due to preventable or treatable factors like a rise in body temp, fatigue, and infection.  That is part of the normal up and down of everyone's "normal".  But, the lack of any real progression tells me (and I am only guessing, based on what you said) that your disease is stable for now with the intermittent litttle and correctable ups and downs.  Perhaps the DMD is holding?!

The critical part of SPMS to understand is the P - Progressive part.  When you clearly progress in disability without ever returning to a better state you are looking at a progressive form.

PastorDan - does this answer for you?

Neurologically Stymied - When you see the new docs at the CC, if you can - ask them why the clinical part of your disease does not carry more weight, being that the diagnosis of MS is "clinical one."  The MRI need only show "evidence of abnormality that is 'consistent with' MS."  So, the biggest question here (in my mind) is - can MS cause the lesions that you have?  Even if they aren't classic, do people with MS have some lesions like yours.  If so, given the history and abnormalities on exam, "could" those lesions be from MS, even though they are not "classic"?  The McDonald Criteria does not require "Classic MRI lesions", just lesions that would be consistent with MS.  If you have lesions on the meninges or that look like cysts or tumors or if they are clearly lacunar infarcts, then the answer is "no."  But if the lesions of MS "can " look like yours, then why do they not complete the picture and hand you the diagnosis?

SB - Does this make sense?  Remember, you can always say that a family friend who is a doctor with MS, asked you to ask this question.  If your history and physical complete the MC, then the MRI need only be consistent.  It does not have to have a specific number or pattern of lesions.  

Qualification:  Many neuros want to see larger (>2mm) lesions to count for MS.  If all of your lesions are punctate, then you amy be in for a rougher time.  This is silly, because, even in MS some lesions are punctate, but still.


147426 tn?1317265632
by Quixotic1, Dec 21, 2009
SB - If you have never had relapses followed by improvement, then it IS much more difficult to make a diagnosis because then you are talking about PPMS (if this is MS).  They are more other neurodegenerative diseases that progress steadily.  

To diagnose PPMS you must have a year of steady progression and have all the mimics ruled out.

I'm sure you have read it, but here is the description of what the neuro must look at to diagnose PPMS:

5th Scenario
Insidious neurological progression of symptoms and signs suggestive of MS

These patients present the hardest case for the doctor.  They do not have the clear-cut attacks and remissions of the RRMS patients, so their history looks much like other chronic neurologic diseases.  The doctor must rely on long-term deterioration and accrual of disability.  In this case spinal lesions and a positive CSF become more important.  In fact, the two of them together can substitute for brain lesions.  In PPMS the majority of the disease is often found in the spinal cord.  But the spinal fluid does not have to be positive as it was required to be by the first McDonald Criteria.   This is in acknowledgement that there seems to be less inflammatory disease in PPMS, thus less of a tendency to form inflammatory immune antibodies (O-Bands) The diagnostic requirements for PPMS are:

    1) One year of disease progression.  This can be done looking back at the patient's history, or by following the patient for a year and observing progression or a combination of both.


    2)  2 out of the 3 following requirements:

Positive Brain MRI - this would consist of 9  T2 lesions or (4 or more T2 lesions + Positive VEP)
Positive Spinal cord MRI with 2 or more focal T2 lesions
Positive CSF (either +O-Bands or +IgG Index)


I know when Craig was being worked up, he had at least a dozen small lesions, but they only wanted to count the 4 that were greater than 2mm in diameter.  This seems to be an unwritten rule (myth?) that many docs work from.  Certainly the McDonald Criteria do not specify any minimum size for a lesion.   At NYU the doctors did not impose the size limit and quite quickly came up with PPMS as Craig (Monotreme's) diagnosis.

In my case, I have often felt that my course was most consistent with PPMS.  I certainly have had more than a year of very slowly increasing right hemiparesis and spasticity, with the appearance of other problems.  And I fulfill the 2 out of 3 requirements with >2 spinal lesions and a positive IgG Index.  My last neuro, whom I respected, but didn't like, felt that my small lesion load made PPMS VERY unlikely.  So, even he was a lesion-counter of sorts.

Well, I digress.  Did any of this help?


751951 tn?1406632863
by PastorDan, Dec 22, 2009
Helped me, Q.  Muchas gracias.

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