????Don't know what to think. Any thoughts?

[LATW]

Here is the story and my confusion.

I started with ON spring of 2007 along with right side weakness and problems with my right leg. I had an abnormal brain MRI.

Went to neuro but had a dumb one at first. Found another one who said my neurological exam was ok. She was not sure it was MS or was not MS. Blamed ON on having too many children and not taking time for myself. weird woman.

The ON got better but not 100% recovered, I still have blind spots and nerve damage.

My leg did not get better. I progressed from being able to do the majority of the neurological exam to needing AFO's and a rollator in about 12 months time.

I have not had any clear recovery back to where I was before the ON started.

I am just worried about it. I was supposed to see my new neuro, great guy, this coming week but the appointment had to be changed.

Two weeks ago I went to the E.R. after I lost my sight. It did not go completely black but it was completely blurred. More in one eye than they other. I have double vision that comes and goes and it is so frustrating.

So two years ago I was taking care of my 5 children. Able to go to the park, zoo, mall and walk on my own. Now I can not go with out my AFO's and can not walk around the zoo park or mall.

Now I have a damaged optic nerve, bilateral babinski, urinary retention, balance problems, spasms, positive Romberg. My lower body is much more affected than my upper body. I do have significant weakness in my right hand though.

Driving is an issue. I use the motorized carts in the stores now.

There are a few things that come and go like horrible tingling in my scalp. Numbness. Midsection numbness and squeeze.

Anyway, I am dx'd with RRMS and I am starting to wonder if that is the form I really have.

I did have trigeminal neuralgia several years ago and it is finally under control with a Trileptal and Klonoptin.

There was several years between the TN and ON with no problems.

I don't know if TN would be considered a presenting sign or not.

I am not having any clear flares that need any treatment but progression for sure.  The previous MS doctor I was seeing said "we have a real problem here"  but did not do a follow up visit because the clinic closed do to lack of funding.

I am seeing a new Ms doc who seems very good so far but I have not asked him this quesion.
__________________
LA Optic Neuritis----MS Diagnosed 2-13-2008

[sllowe]

LA,

Hey LA - long time, no chat.

Are you feeling the RRMS is off and you could be at the next stage?

When is your reschedule? It's not unreasonable to ask this Dr. straight up what is going on.  Are you still taking DMDs? I remember you were having probs w/them.

-shell

[LATW]

Hi Shell,
I am wondering if I am at the next stage.  I am very frustrated because nothing lets up.  

I go on Oct 13th now.  Not that far away but still frustrating.  

I went to Betaseron after more than a year of Avonex.  The MS doc I see now said he does not even give Avonex as an option because he does not believe it works.

The Betaseron is much more tolerable for me and the shot is NOTHING compared to Avonex.  

The RRMS  is not making sense as a dx.  I am not questioning MS but I am wondering what my MRI is going to show.

The previous MRIs I've had were done on a traveling machine.  These I am going to have done this time will be in an MRI facility.

The doc said Neurologists are the ones who actually do the MRI's so the knew just what he wants.  So that is good.

My original MRI showed ON and an area that lit up with contrast and on old black spot.  

The first C-spine I had showed nothing.  But that was on the traveling machine and I was so uncomfortable I had a difficult time now moving.

The sides of that tube was hurting my elbows!

I just keep noticing progressing loss of function in my legs and I am concerned.

LA

[Deb61]

You were diagnosed about when I was last year.  I had ON this last summer, but have had visual symptoms for much longer than that.  When I went back to the opthamologist in June, he said that my optic nerve looked like that it was healing.  I couldn't believe it because I still have double vision and the Vaseline vision during times that I'm not feeling well (like now).  It does concern me because I always wonder if this is from another bout of ON or if it's just past damage.  However, I went in June and my vision was wonky then.  

In your case, it sounds like you are definitely having another bout of ON.  Although you say that you're not in a flare, your vision problems may warrant steroid treatment.  

It also sounds like you need to ask your present neuro about whether or not you are progressing into SPMS.  IIf he knows this, he may want to consider a more agressive treatment like Tysabri.  You don't want to lose any more mobility or your vision.  

[LATW]

That is the question I am afraid to ask and hear the answer to!  But I really do want to know WHAT is going on.

Actually I was dx'd with ON April of 2007.  Again January 2008.  Dx'd with MS Feb 2008.

And yes I do believe I am having another round of ON. So did the E.R. doc.

Saw my eye doctor a month ago and he thought the same thing however I need an MRI to confirm.  

My optic nerve in my right eye is already damaged. This time I THINK it is in my left eye.

Thanks Deb!

LA

[Sailorsong]

Your history sounds a lot like mine (but over a shorter period). The last time I spoke to my Neuro he said he thinks I use to has RRMS which has now progressed into SPMS based on my history and symptoms. While you might be afraid to ask if I were you I would ask. At the very least it would stop the additional stress of wondering.

Dennis

[LATW]

Hi Dennis,
I am making out a time line and am going to take it to the doctor with me.  That should help.

So if I am SPMS what does that mean?  I really do not want to go off the DMD's.

When I am not on one I get incredible pressure behind my eyes.  It is awful and nothing relives it.  

When I first went on Avonex I realized that pressure was gone.  I was not sure if it was the Avonex or something else I was taking.

Then I went off Avonex for about 2 months and the pressure started back up again.

After I had been on Betaseron a couple of weeks the pressure was gone again.

So I have come to the conclusion that the DMS's help relieve that symptom at least!

LA

[Sailorsong]

So far I am not offically Dx'ed but only suspected as I don't fit any of the usual molds for MS. As such I have not been on any DMD and it is pretty much too late for me (20 years of symptoms). But if something helps control your symptoms I would say to stay on it if possible.

I think they only real difference between RRMS and SPMS is that you don't get any periods were you have remissions. At least that is my understanding. Basically with me my symptoms are pretty much constant now and have been so several years. That is the main reason my Neuro feels I have SPMS now. Years ago there were times when I felt almost normal for periods of time.  

The time line is a great idea. I think that is one of the main reasons (besides finding a good Neuro) that my doctors are taking the possible MS seriously now.

Dennis