Questions for Neuro appt.

[amas]

Hi everyone.  I have an appt on Friday.  The first and only time I saw this Neuro is when he dx'd me. His opinion is that I have benign MS.  He will be treating me.  He gave me the choice of Copaxone, Betaseron and Avonex.  I am leaning towards Copaxone.

The jury is still out on him because he contradicted himself on his opinion of my symptoms and the possibility that there are more lesions not being seen (because of my neuro exam) but decided not to perform a new MRI of the brain because my last one had been 6 months before?.  (In 2007 I had two MRI's 6 months apart that showed a change).  He did request an MRI of the Cervical spine and a VEP, which I get results from on Friday.  

I'm glad he is treating but I have a couple of concerns.  When I did my timeline (which he did not want to see) it takes me back to 1990.  I had symptoms once a year or skip two or three years until i hit late 2005 and 2006 , which now I have 3 or so symptoms that are longer and worse.  From 2007 on until two weeks ago I've had FEW good days.  My symptoms have been months long and some have never left now.  I don't know if my headaches that started when I was about 10 (1975) and many times were the result of being in the heat or if when my legs went numb at 15 during a migraine attack and that I was the clumsy one growing up are part of this disease?  I may never know but this leads me to my question.  (I know finally! and sorry)

Is it that important to know how long I have had the disease when choosing the correct medicine?  My LP results state that I had greater than 5 "O" BANDS.  Does that help determine length of time?  I'm curious because I think I read that some medicines might be better if you were progressing or some weren't effective.  Also, am I correct that when i read info. on the choices of drugs that they are only effective in 1/3 of the people?

I hesistate to ask because last week I started crying because I found myself cleaning the 3 bathrooms twice in the span of 6 days.  I don't know if I was crying because I was able to do it or  because it hit me hard how my life had not been mine the last two and half years.

So my last question.  Is this pattern familiar to anyone?  Two and half years of constant issues and now they are slowing down.  Some are permanant i feel but I am better these last two weeks. I'm happy but cautious.

Hope someone can give me some insight.
Anamaria

[Quixotic1]

Sorry - all you guys look alike from here, lol.  I remember all sorts of things that didn't happen and very little about what did happen.  It makes life interesting.

Headaches/migraines alone for decades would not be characteristic of MS.  The episode of limb numbness with a migraine sounds just like a complicated migraine and not an attack of MS which would have had to last much longer.  Migraine onset around puberty is very typical of migraine disease.

Again, Benign MS is a definition that is made only from the symptom course, not from the appearance of the MRI!!!

Yes, lets get another opinion.  You don't have to put off starting meds if there is going to be a delay, but I have to wonder why he didn't offer Rebif.  It would be the better choice for someone with escalating disease I would think, and has a better side effect and neutralizing antibody profile than Betaseron.

Copaxone is not approved for SPMS nor is Avonex, but Rebif and Betaseron are, I believe.

quix

[amas]

Thanks all for responding.  I did not feel comfortable with this doctor because I felt he wasn't or didn't want to hear about my symptoms and how my life is affected.  He was going off the MRI report that he felt suggested a benign course.  I am anxious to see the results of my Cervical MRI but still feel strongly that he should consider my symptoms.  I will be requesting a second opinion. (maybe he was having a bad day?)  Still I am glad he is treating me.  He said he couldn't deny it since my LP was positive.

Quix I'm not sure if I ever posted about my childhood history of migraines (and you responding -???) but have been curious about the connection.  I've seen sites listing headaches as a less common symptom of MS. The migraines followed me into adult years :(  They have decreased in severity and in how often they come.  That I'm happy about.

Anamaria

[Quixotic1]

Well, the important thing is that he is treating you.  That makes it a lot less important what he calls it.  HOWEVER, the term "Benign MS" is based on a pattern of disease that starts with an attack or two THAT COMPLETELY OR ALMOST COMPLETELY RESOLVE and are then followed by very long periods of no (or extremely minimal) symptoms.  It is based on your symptom severity and NOT on the appearance of the MRI.

It sounds to me like you have had a Relapsing Remitting pattern of disease now for about 18 years.  And it sounds like the frequency and severity is escalating.  Also, you are not having the symptoms resolve very much.  So, even though you did not really ask it this way, you are wondering if you are entering a Secondary Progressive period of disease and may need something stronger.  From your description of symptom and attack worsening it sounds like you may be.  

If you are your doctor is not acknowledging it.  Calling this "Benign MS" seems ludicrous.  Because of this, I think a 2nd opinion would be a good idea.  I bet he is basing his category on your MRI appearance and that is not the accepted definition.  You clearly are not having a benign course.

I should know, but I am not totally clear on what percentage of people respond to a drug.  I thought it was about 40%, but that isn't much more than the one third you heard.  And where one med doesn't work another may.

I know that I have told you before that my suspicion was that your childhood history of headaches was not MS.  No one will really ever know.

As to really how long you have had the disease....you can't tell by the number of O-Bands.  Some people with just a few years of disease will have 10 or more, so it doesn't really tell us.

Bottom line:  I think you need a second opinion about 1) Whether you may be entering a more rapid progression of the disease and 2) which med(s) might be the better choices.  I will look it up.

Have to run.

Quix

[Momzilla]

OK, OK, you know I'm just funnin' with ya.

I am glad this "guy" as we'll call him is treating you, too.  Better right now than having to start over with someones else.  I guess he just rubs me in the wrong direction with his "Benign MS," to start.  What IS Benign MS?  Is there such a thing?  Don't even get Quix started...

And then there are his contradictions.  But he IS treating you, which is a very good thing!  I'm glad you've chosen a medication.  I have not heard the statistic that DMDs are only effective in 1/3 of MS patients.  Maybe someone else knows where that comes from.  I think that has to be wrong.  In patients with RRMS, DMDs are recommended to slow the progression of the disease.  

The course of your disease sounds like many others here, I think.  I certainly have heard a lot of stories, and, while everyone's course is unique because damage is different, your story certainly fits in.  

I don't know how the number of O-bands works with regards to the lenght of time one has the disease.  Someone else may be able to help with that.  But, I don't think it works that way necessarily.

As the mother of five boys, I just want to caution you never, ever to clean 3 bathrooms in 6 days ever again.  It's just wrong.  I'd cry, too.  I'm tearing up now.  Joking aside, I'm sorry you were emotional, Anamaria.  The strangest things can set us off.  With me, it's usually housework, too, oddly enough.  Or taking a walk with one of my boys.

Hope you feel better!

Hugs,

Zilla*

[Momzilla]

Sorry, you only get one question per post.  Did you not read the rules?

Zilla*

[Tahiri_Veila]

I am glad things are starting to look up.  I understand how it feels to not be able to do the things you love.  I have only had problems for the last few years, but this last time lasted about 3 months.  I couldn't do anything and I felt like I was not there for my husband and daughter and the simple things around the house felt daunting.  Then all of the sudden the symptoms stop or lessen.  This has happened a few times although I have never had it last a year.  I am not diagnosed with anything, so at least you know what you have.  I am glad for that because now you can get the treatment you need.  If you do not feel comfortable with this doctor ask him to refer you to another neuro or MS specialist.  You should always feel comfortable with your doctor and what he is saying and if not you should be able to ask him why he thinks what he does and other questions.  I hope things continue to improve.  
Tahiri