ms that you know is increasing but dr says not

[LKPETZOLDT]

Exp...my cousin is a doctor an name ******. Anyway...how can you tell if you should have a biomarker done. I am sure my MS is increasing, however the MRI shows not..my speach, falling,eyesight....how do you convince a DR. you KNOW something is going on????? Linda Petzoldt

[Quixotic1]

And they are correct that there is no biomarker that shows progression of MS.  The HLA marker is only usable for helping with the diagnosis.  It will not change if the disease is quiet or active.  

I also strongly disagree that there is a conspiracy to suppress certain neuro diagnoses.  I believe the problem is in the personality of the neurologists themselves.  They see things in black and white and the reliance on the MRI falls into this way of thinking.  Many are also pitifully educated about MS.  The problem is they are often too arrogant to accept "education" from patients.

Quix

[Quixotic1]

Hi, and welcome.  We haven't spoken before.

You bring up a problem that we have discussed many, many times; that is, how can one tell if MS is really acting up and progressing?

The answer, in fact, is very simple.  But, in reality it can be harder.  MS is a disease that is DEFINED by it's clinical behavior.  That is to say that the neurologist should base the diagnosis heavily on the patient's symptoms and the findings on neurological exam.  The disease categories, in fact, are solely defined by the clinical picture.  If, for example, your symptoms come and go in attacks with periods (at least 30 days) of improvement or stabilization you are placed into the category of Relapsing Remitting.  The MRIs have nothing to do with it.  If you have had steady (fast or slow) progression of symptoms and disability over at least a 6 month, but usually a year, with no real discernable periods of improvement and can't point exactly to when sets of symptoms appeared, then you are called Primary Progressive.

Many neuros. though, insist on treating MS as if the diagnosis and the assessment of progression can be determined by the appearance of the MRIs alone.  This is really one of the greatest barriers to diagnosis and to proper treatment of symptoms that we face.  We call these neuros (among other things, all less complimentary) "Lesion Counters".

Studies, statistics and personal experiences have shown clearly that the MRI can remain stable and the patient can have quite marked progression of symptoms and disability.  The really capable, well-educated MS neuro will look first to what the patient tell him/her.  Symptoms, such as pain, spasticity, urinary problems will be treated NO MATTER WHAT THE MRI SHOWS.  They may want to look at the MRI to see if it is keeping up with the symptoms, but the good neuro will NOT rely on the MRI to determine what is going on.

They know that the "truth" of our disease lies in "our experience" with it.

This is important for both those people still looking for a diagnosis and for those who already have the diagnosis.  For the former it may mean getting a diagnosis or not (if they do have MS).  For the latter it means the difference between being along to suffer because the MRI does not show enough or getting proper treatment - eg. pain meds, meds for spasticity, meds to help control the bladder

The doctor that contradicts what the patient is saying because of a lack of change in the MRI is showing that 1) he gives no credence to what the patient reports - always a bad sign, and 2) he is poorly educated in MS and it's relationship with the imaging tools we currently have.  It is well established that MRIs do not pick up all lesions and that tiny MRI-invisible lesions can cause serious symptoms and disability.

When I first developed Trigeminal Neuralgia (a severe pain syndrome of the face) my neuro absolutely believed I had it.  He did do an MRI.  When the MRI was unchanged this is what he said, "Well the MRI doesn't show the lesion causing your TN.  That's great!  No one wants a big lesion on their brainstem."  In saying this, he was indicating that he believed me and that he KNEW that TN could be caused be a lesion too small to show up on the current state of the art MRI - a 3T with great software.

No MS patient is well served by a neurologist who is married to the MRI and disregards the patient.  Can we get them to change?  I doubt it.  They are fixed on the MRI as the almighty perfect representation of the disease.  We all know this is far from the truth.

My best advice is to find a new MS neuro who is better informed about MS and more focused on the patient's experience.  They are out there.  Dozens of us will attest to this.  It is worth the effort to find them or we will beleft poorly treated or undiagnosed.

There are a couple of Health Pages that might help with these concepts.  The first is the definition of the categories of MS.  Note that they depend solely on the clinical picture (symptoms and exam signs).

http://www.medhelp.org/health_pages/Multiple-Sclerosis/Categories-of-MS/show/32?cid=36

The next reveals the many ways in which the neurologist and the MRI can miss what is going on in the brain of a person with MS.

http://www.medhelp.org/health_pages/Multiple-Sclerosis/How-Can-a-Person-with-MS-Have-a-Negative-MRI/show/161?cid=36

I hope this helps.

Quix, MD

[SLadylani]

Persistence! They taught us in Nursing School that if you feel there is something wrong with your body, then there is, and it's your responsibility to make sure you get it taken care of. Doctors can be stubborn and close-minded, but showing you're dedicated and serious by keeping a daily journal of symptoms and continuing to persist with appointments should let them know something is goin on. Good luck!

Sara RN

[MsWobbles]

You asked the magic question: How do you convince an MD there is something going on?    

I have been blown off and lied to so much by American neurologists (who are otherwise quite educated and knowledgeable) that my conclusion is that there is currently widespread suppression of neurologic diagnosing going on in this country - possibly incented by our government (who does not like paying disability).  This is especially applicable to people in their 50s and up (until they pass their maximum age of disability).  What other answer can there be for the obvious lies we are hearing?  

Positive objective symptoms are ignored or turned into negatives.  My positive neurologic exams when I could not heel-to-toe walk and had a positive Romberg were written up as negative exams with the neurologist falsifying in writing what really happened.  My decreased leg strength has been written up as "poor patient effort" or "deconditioning" even though I walked regularly.  

After 6 years of this nonsense from American neurologists, with progressing symptoms, and no diagnosis, I really think we may have to go outside this country to get diagnosed honestly - and even then, don't go to a country the US government has under its thumb or you'll likely just get more of the same BS. That is what 6 years of multitudinous trips to American neurologists has taught me.  Look elsewhere!!!

Good luck!!

WAF

[COBOB]

I;m not sure what you think you are going to get with a "biomarker."  Some People with MS (PwMS)  have a particular set of HLA  markers, but the same markers are present in many people without MS.  The first question is "Are you diagnosed with MS?"  

The next part is that you need to understand the difference between symptoms (what the patient says) and signs (what the doctor can see and measure.)  Most neurologists consider an increase in lesion load to be a sign of disease progression.  They also consider increases in the Expanded Disability Status Scale (EDSS) to be disease progression.  

Changes in symptoms can be just that.  Just because the symptoms change, doesn't mean that you have disease progression.  In general, MS is a progressive disease of the Central Nervous System.  Many of the PwMS on this forum take DMDs to slow that progression.  If you are diagnosed with MS, are you taking a DMD?