DMD/Inflammation/Dx Type question

[Sidesteps]

I have two follow-up appointments in the next 10 days.

My Neuro-Ophth has mentioned that she will be consulting with my other Neuro's regarding long term treatment plans. I probably should do a little research but this one area I am not showing my typical "go get'em" attitude. I'm feeling very intimidated by them all.

That said, I was pleasantly surprised that I did not have any adverse reaction to coming off the IVSM. I was not in the least bit moody in a negative way. I seemed to responded well. I am fighting a cold and some of my symptoms are fluctuating a bit again but they aren't horrible. I was a little bit disapointed this morning when I woke with more vision symptoms but I realize IVSM is not a cure. I'm hoping once over the cold things will stabilize. We will see ~

In looking back to how I feel/felt after IVSM and nearly this last two years, I have almost always had some chronic symptoms. I never really reverted to even being close normal. I have also had 4 distinct flares. I did have a three month period where I felt better than I had in a year. It seems, now that I have something to compare to, there has been some sort of constant inflammation going on...

I am sort of concerned about the type of MS probably as anyone would be if they haven't really had a solid conversation with their doctor. I realize that time will tell. I know there are several here with RRMS that had a similar experience early on....at least, I think they did...where they didn't really feel like they remitted completely. I guess I'm asking how do we know the difference when it seems inflammation is nearly a constant?

I know I should (and I will) address this with my Neuro's.

My question stems around a couple things.

Does IVSM treatment give them any indication as to type of dx?
Do any of the DMDs treat the underlying inflammation?

[Sidesteps]

Dennis,

That DOES make sense. I started to right a similar analogy with my surgery and the scar; of course, the scar is still there... SO?? lol ~ :)

[Sidesteps]

I sent an email to my doctor. I can't get into see her until April. I see my Neuro-Ophth on thursday who mention long term treatment. I'm scared to death about this but it's important to be on the same page.

[Sailorsong]

What you stated in your last post about inflammation vs damages makes sense to me, but then I'm a little slow myself of late so who knows. :) LOL.

I guess it comes down to that old chicken vs egg thing. Does the inflammation cause the demyelination or does the demyelination cause the inflammation.

The way I try to think of it is using a cut. If you have a cut that becomes infected ( inflammation) it can't heal itself. Once you get rid of the infection it then can start to heal.

So if you take that and use it on your brain. Once you get the inflammation under control. the brain can start to heal. So may what is happening with the IVSM treatment maybe the profound improvement is because the damage is minor so the brain can kind of fix things quickly causing the improvement.

I sure hope that makes sense. LOL

This is just my opinion and might not be true.

Dennis

[Sidesteps]

PS: I'll start keeping a log again. I do think it will help maybe connect some dots.

[Sidesteps]

Thanks guys ~ I am having some trouble processing everything here. I managed to get a cold so I feel a little slow. Sorry.

I guess, what I'm trying to understand is: I have had some sx chronically for nearly a year and half - a lot of my blurring, ghost images, even my muscle twitching/jerking are nearly a constant. There are also a lot of symptoms that came for a few weeks then resided but I might have those intermittently after (like hearing fluctuation/tinnitis). I responded so well to the IVSM many of my symptoms nearly disappeared or signifantly reduced nearly immediately.

It tells me something but I'm not fully understanding *what.* It would seem those sx that resolved are more related to inflammation vs actual damage if the IVSM worked, no?  That's what I'm asking what does that say?...that I've had constant inflammation?

Now, as I move away from the IVSM treatment (and I have a cold and running a low grade temp) I am still very impressed with how I feel. This would have knocked me out prior. I am feeling some additional increase in sx but I would expect that under the circumstances.

I understand that the brain can and will take time to regenerate or rewire itself but if you add a medication that reduces the inflammation and allows the dots to connect (and it responds!) that should leave me with where the actually damage (remaining sx) are located vs the damage that is still being caused by inflammation. Right?

I'm wondering how do they treat that and whether or not it gives them insight into the type of MS?

I might be confusing myself more. LOL ~ Hopefully you can see where I'm going with that.

[doublevision1]

Interesting, thanks GG!  Think I'll ask my neuro about this at my next visit.

[Guitar_grrrl]

It's an old article, but cited a few times elsewhere...

http://www.neurology.org/content/65/1/153.abstract

[doublevision1]

Question for all: would the blood test for C-reactive protein be useful to determine if a MS flare is occurring?  Although I guess even if it came back positive, this would only say there is inflammation  somewhere in the body, not necessarily due to MS?

Never thought about this at all till just now.  Any ideas, anyone?

[doublevision1]

To add to Mary's comments re: the body repairing itself, this occurs not only through remyelination but also though neuroplasticity.  The CNS has some ability to re-wire itself, with some nerves taking over for the function of other, damaged nerves.  Quite an amazing process.  And yes, this takes time long after acute inflammation has subsided.  My severe double vision took a year to improve to the point of mostly normal function, and my neuro and neuro-ophtha attribute most of the improvement to neuroplasticity.



Re: keeping track of symptoms in a journal, this is a very good idea, esp for those in limboland or early in their dx or those doubtful of their dx, as this history is another component of the diagnostic process.  That's not focusing on the negative.  It is documenting facts.

[twopack]

There is dispute about which comes first - demyelination or inflammation.  It's a chicken and egg type thing.  I have heard though that it is believed there is far less inflammation involved with PPMS than RRMS.

Are you saying that you have ongoing inflammation because you have ongoing symptoms?  The two don't necessarily go hand in hand.  Symptoms can linger for quite some time even after inflammation is calmed,  They'll continue until the body "repairs" itself with remyelination.  That process takes time.  How much time varies from person to person but there are no shortcuts - period.

Mary

[Sidesteps]

I don't have to wait too long - I have a follow-up next Thursday with my Neuro-Ophth and my "2nd opinion" on the 12th.

I think I'll send my Lady MSologist a follow-up email. I am suppose to schedule a follow-up with her as well in April due to the change in circumstances her nurse said. I'm sort of waiting out these two appointments but I probably shouldn't drag. my. feet. ;)

They are a little deeper on the conversation food chain. Thank you.

[LisaJF]

I wrote my symptoms down in a log because I had a hard time recalling whatever the hell I had the day before, let alone a week or a month. LOL.

I suppose there's the perception on the MD's side that we are overly preoccupied with our list of symptoms, but then again, when its time to recall what has been happening, I need to pull that out!

Those are good questions to ask your Neuro when you see them.  I don't know if you are able to place a call to the office to have them call you back and ask them during the day?  If so, do it.  This way you don't have to wait until the next appointment.

Lisa

[Sidesteps]

Ohhhh, okay. I'll have to look that up. That makes sense.

I need to write all this stuff down - I should have kept a log too of how I was on the IVSM and post IVSM.  

I stopped keeping a log when I felt like the doctor's weren't really listening to my symptoms or interested in the log. I thought it was focusing on the negative too much.

[Sailorsong]

My guess would be with an immunosuppressant like I am on.  My Neuros have toss around both SPMS and PPMS for my DX and are using CellCept to suppress my immune system and therefore keep me from having inflammation.

Dennis

[Sidesteps]

Ok, so the DMD's treat part of the process but not all of it.

How do they treat the chronic inflammation with recurring IVSM? I've not heard of that...or I guess I have with pulse therapy.

[kwarendorf]

I'm not sure response to IVSM provides a great deal of insight. My response to IVSM was both rapid and profound. Almost the minute I started my symptoms began to recede. And yet I was initially dx with SPMS, within weeks of my only IVSM course.

There are two distinct components to a relapse/flare; the demyelination and the inflammation. The inflammation is a result of the demyelination.

The IVSM only addresses the inflammation. IVSM does nothing with regards to the the demyelinating process or its cause. The other side of this is that DMD's do nothing to address the inflammation.

Hope this helps,
Kyle