VERY confused

[Tawnya1959]

I was diagnosed with MS 5 years ago,at the the time I had 6 lesions in brain. 2013 I had 13 new ones in a year. 2014 and 2015 no new ones. They are always called benign as they don't light up. My question is can I have still have some MS symptoms. I seem to read conflicting information. My neurologist sees me once a year and since the lesions are not lit up, I feel discarded. I am not on medication, we both agree that I should wait until if or when the lesions wake up. Off and on I feel out of sorts, it is unusual sypmtoms that I can only wonder if they are MS symptoms, occasional feeling of just can't process a thought, or lose the thought. Occasionally have momentary feelings of arms or legs not quite working right. Occasionally feelings of my head is going burst, like pressure building as if blowing up a balloon. Occasional attacks of fatigue. Occasional episodes of legs are weak. These symptoms of course could be caused by many things, but my question is is it possible to have symptoms of any type when you have many inactive brain lesions??
Thank you :-)
Tawnya

[supermum_ms]

It is possibly saying a lot, if you haven't been told you have 'RRMS', short for Relapsing Remitting Multiple Sclerosis. RRMS is the most common type of MS, with statistics hitting 80% and it's basically the main type of MS that the disease modifying drugs are prescribed.

These day's even Clinical Isolated Syndrome (CIS) which usually develops into RRMS and is seen as the first MS attack, has the recommendation of starting DMD's as a preventative measure.

It is extremely common when someone is diagnosed with MS, for them to be initially classified as RRMS and prescribed a DMD. Then over the next few years, their relapsing and remitting symptom pattern is monitored, to not only see if the DMD is working well enough or if it needs to change but to additionally confirm the type of MS they have, because DMD's don't really work with the secondary or primary progressive types of MS.  

I think it might be very informative to have a look at your medical records, I'd be looking at all the MRI's and specifically noting the lesion locations, any abnormal clinical findings from your neurological assessments and also what diagnosis or type of MS you've been classified with.

To be honest, it's in your best interest to be more proactive with your health, as on the surface it seems that whilst you've been diagnosed with MS, you may not be as informed about what 'you' are specifically dealing with. Well not as informed as you probably should be, 5 years after being diagnosed with MS, so i really do recommend you get your hands on your records and at least get a second opinion with an MS specialist, rather than sticking with a neuro that you don't have a good relationship with.

I personally haven't ever had to deal with headaches beyond normal stuff, though i do get pain in my eyeball which feels like its been attacked by an icepick. http://www.msfocus.org/article-details.aspx?articleID=868  this is a good easy to read article on MS and Migraines that might help....

Cheers..........JJ  


[note: CIS 'basically' being diagnosed from diagnostic evidence of a 'first' symptomatic attack, and or MRI evidence of one demyelating lesion or one lesion in one of specified diagnostic locations (see MS Mcdonald criteria)].

[HVAC]

I have had headaches as long as I have had MS. They have calmed down more so since I went into menopause. WE care about you.

Alex

[Tawnya1959]

thank you so much for responding with information. I have always felt like I am in a dark place, being told I have MS and have over 20 lesions but apparently the lack of ovbious outward sypmtoms on continous basis and that they don't present themselves when she sees me, I feel gets me blown off, it is as if she is most interested in patients with full blown MS.  I refuse to see her assistant at all, I believe the lesser MS patients are given to the assitant and I do not like her demeanor.
I have already put out feelers for a MS specialist in Wa.State, not just a neurologist. I had never heard of RRMS, that , to me, somewhat validates that I am being blown off by current Neuro.

I will update my post when I know more :-)

Question: do any of you get headaches out of the blue for no apparent reasons? there are times when I get what I call SPOT headaches, it's like a certain spot of my brain aches and if I could just lift a lid and pour something soothing on that spot, it would help. Yes, I sound a little looney, but then again, my brain has owies! haha!

Tawnya

[supermum_ms]

Hi Tawnya and welcome to our little MS community,

I was a little shocked to read your post to be truthful, the entire point of Disease Modifying Drugs (DMD's) is to slow down the disease, reducing relapses and new lesion development.

For the MSer that translates to their DMD minimising the amount of damage MS is doing to their brain and or spinal cord, which reduces symptom progression, new symptom development, less disability etc etc.

Your neurologists is basically gambling on the lesions being silent (benign) to be comfortable waiting until a yearly MRI catches new or old lesions under attack, but the major flaw with that prescribing methodology, is that you are the only one who's taking all the risks and has to live with the consequences when the wheels eventually fall off your MS bus...

The only logical thoughts i can come up with are:

a) IF you haven't 'ever' experienced an obvious relapse, 'may be' the type of MS you have is not RRMS but 'possibly' PPMS and then DMD's wouldn't be prescribed because there are no relapses to reduce with PPMS, it's instead   a slow continual worsening or progression, over many many years.

b) IF you haven't experienced any of the clinical neurological signs or common symptoms and pattern suggestive or consistent with MS, 'may be' the issue is more to do with the totality of your diagnostic evidence todate and symptom history etc over the last 5 years, is increasing the 'possibility' of misdiagnosis and the (silent) brain lesions being due to a different medical condition eg ischemic vascular disease etc

c) The amount of up to date MS knowledge and or experience of your neurologist 'may be' a factor, you only need to read 'lies my neuro told me' to see why an MS specialising neurologist is definitely in your best interest when it comes to MS.  

At the end of the day, if YOU are feeling "discarded" and are questioning your neurologists treatment or lack there of, it truly is in your best interest to get a second opinion with a neurologist who specialises in MS!

To answer your question "is it possible to have symptoms of any type when you have many inactive brain lesions??".....Absolutely YES!

Theoretically lesions can be clinically silent (silent = no symptoms), because not every active or inactive lesion is symptomatic, as it totally depends on the location of the lesion(s). If complete lesion demyelination has occurred, it will not show activity again, as the MRI is basically only lighting up like christmas tree lights, the lesions that are 'currently' under attack which can be new or even older lesion that are not completely dead ends yet.

As ess mentioned the timing to catch active lesions is problematic because of the small window but when it comes to MS, catching active lesions isn't as relevant as the continual new lesion development and their location.....

Cheers.........JJ
  

[HVAC]

Hi Tawnya,

The deal with MS progression is it happens with or without symptoms. People with MS need to be on one of the medications early on to slow progression. If you wait until you have permanent damage the medications will not reverse the damage. They will slow further damage but there is no going back. Any good neurologist would urge you to go onto one of the drugs. I do not want to scare you. You just have to advocate for yourself.

Is your neurologist a MS Specialist?  Not all neurologists are experts on MS.He does not seem to understand MS. Lesions are lesions. Yes the ones that light up are newer but you definitely have enough to be considered progressing. Lesions and symptoms do not always go together.

I have many symptoms of MS with the same three lesions year after year. My MRIs do not change.

The symptoms you describe are MS symptoms.  

As Ess says there is no benign MS.

Alex

[essdipity]

Hi there. In my opinion you are getting very bad medical care and lots of bad info from your doctor.

MS lesions light up, or enhance, only when they have newly formed, meaning within about 30 days before the MRI. This information is important mainly for the diagnosis of the disease. If doctors see both 'old' and 'new' lesions, that tells them that the diagnostic criterion of dissemination in time is fulfilled. Once that's been met, though, lesions are lesions. My own brain is full of lesions and I've had loads of MRIs, yet not once has an enhancing one been identified. However, since the scans kept getting worse, that too shows dissemination in time. It's really a matter of the timing of the MRI.

Old lesions can certainly cause lots of problems, even though they will never again enhance. Usually this will mean the return of old symptoms, and a full on flare can result. But if the lesions enlarge somewhat they can cause new symptoms too. These are NOT benign, no matter what your doctor says. He can't possibly be an MS specialist, and if he calls himself that he should be drummed out of the corps.

I urge you to spend lots of time at the website of the National MS Society. You will learn a lot, and very possibly you will decide to switch doctors to someone actually knowledgeable about MS. Because your MS has thus far been pretty mild, that's no guarantee things won't change drastically overnight. That's why good medical practice calls for being on one of the treatment drugs ASAP. They have a proven record of slowing disease progression.

ess