Please explain in simple terms!

[seal]

After more than a year, I'm still confused on terminology used for MS.

I was diagnosised about a year ago. Since that time, many of my symptoms are getting worse. For example,s pasms in the same area "progressively " worse. Was just twitching occasionally, now twitching, tightness etc (you all know the drill).

MD & MRI say no new lesions. MD says not progressing.

So, my question:if I'm not "Progressing" why are symptoms and variation of symptoms getting worse.

I should know the answer, but have a mental block to where the answer is swimming around in my head and I can't seem to grasp it.

Thanks

[agate]

The disease doesn't show MRI evidence of progression but you can still have worsening symptoms.

It's possible that the progression just hasn't shown up (where the experts can see it) on the MRI. There are various kinds of MRIs too. Some show MS lesions more effectively and accurately than others.

Or the lesions you already have could be causing your symptoms to be worse.

They don't know why this happens but they do know it does.

[Cat Mom]

Don't forget those symptoms that act up from simply sending/receiving messages across damaged nerves. Maybe across an already existing lesion or just a nerve with stripped myelin. Some new symptoms are not always the result of a new lesion... thank God!

Jen

[JerryD]

In simple terms, MS is a disease that always progressively gets worse. It does not make any difference what type of MS you have been diagnosed with, all MS is progressive. All of the forms of MS cause progressively worsening of symptoms. The Relapsing Remitting form of MS is the only form of the disease that DMD's seem to slow the progression of the disease. That's about as simple as it gets. Good luck

[Thinkimjob]

You're going downhill, the brakes have failed, the drugs make the car heavier (side effects), but they slow you down.

[MSW1963]

Spinal Cord Lesions could account for sx's, particularly sx's that affect the extremities. The spine happens to be a very difficult area to detect lesions via conventional MRI technology.

My own MRIs of the spine are clear, no lesions detected. But based on the clinical exam performed by my MS doc, I have evidence of lower motor neuron disease that accounts for most of my MS progression.

My MRIs of the brain have been stable for approx 12yrs, (with the exception of a 'rebound exacerbation' when I stopped infusion medication), but MS progression is evident based on the clinical exam. Also, I've had clinical evidence of spinal cord lesions since before I was dx'ed over 12yr ago.

On a different note, I believe that the understanding of MRI technology, it's limitations and evidence of MS progression have evolved over the years, based on years of following patients with clinical progression despite stable brain MRIs, and clear MRIs of the spine.

Since you are 1yr into your dx, clinical observations by your MS doc are probably still in the early stages. Over time, the clinical picture based on your sx's and clinical presentation may become clearer to your doc.

Best of luck to you.

[danintheden]

As JerryD said, MS is always progressing, relentlessly eroding nerves' myelin covering at the microscopic level. Over time the accumulating damage becomes clinically evident, even if not obvious on an MRI.

[agate]

As JerryD said, MS is always progressing, relentlessly eroding nerves' myelin covering at the microscopic level. Over time the accumulating damage becomes clinically evident, even if not obvious on an MRI.

I'm reminded of something the neuro who diagnosed my MS said at the time of the diagnosis: "I've never known a case of MS to get better."

Grim but at least he wasn't one of those neuros I've heard about who say things like, "You'll be in a wheelchair in a year!" That kind of remark is so unfair--and so untrue. Nobody can predict what this disorder is going to do.

[thelegendlc]

DMD's and MS Progression

From Jerry above:

In simple terms, MS is a disease that always progressively gets worse. It does not make any difference what type of MS you have been diagnosed with, all MS is progressive. All of the forms of MS cause progressively worsening of symptoms. The Relapsing Remitting form of MS is the only form of the disease that DMD's seem to slow the progression of the disease. That's about as simple as it gets. Good luck

Reply:
According to a study published in the Journal of the American Medical Association on July 18, 2012, the interferon beta (Avonex and Betaseron) DMD drugs do not slow the progression of MS. They they slow the frequency and severity of relapses.

[seal]

Thanks for your help, guys. I appreciate the time & knowledge.

[Tracelyn]

As my neurologist advised me, that sometimes old damage, can cause new or worsening symptoms.

I am fortunate that with my RRMS, they typically do not last too long, or I just get used to it and not even think about it anymore, just take the drugs to make it more manageable.

I will say that 1 year ago I took the average of 11 pills a day, I am now down to 6. I will not say that is typical or even normal, because who knows what that really is with this darn disease.