Deciding wether to start a DMD

[jibjen]

Hi All,

I had a wonderful appointment with my doc yesterday. As far as MRI- NO Spinal lesions and no new Brain Lesions. So basically nothing new to report on MRI's

EMG is negative for any Carpal Tunnel or pinched nerve. I was experiencing spasms but was put on Baclofen and have not had any since.

My Doctor is feeling the problem is of other issue, possibly a brain lesion, although he does not know which one. he also did an additional needle test for numb thumb and nothing is showing a cause for this.

So he suggested we will schedule another follow up for MRI 6 months to 1 year. He stated my MS is stable.

We did discuss the option of starting a DMD despite the fact that i am not showing any progression. He stated if he were to put me on a DMD he would start me on Avonex, we talked about pros and cons of being on this at this point and time and where I am at. He was awesome.

I asked him if he thought being on this would do me more harm than good right now. He said that it is hard to tell. He can not tell me if I will progress in the next year, 5 years or 20 years.. He said that is the thing about MS, you don't know.

I told him for me, personally knowing this is where I am, and for me to move forward with my life, I would feel better if I knew I was taking/doing something about my MS so I don't have to worry about progressing. He said he understood.

I asked him if he would be open to talking about it more at my next appt. He said absolutely. he said let schedule something for mid Jan.

In the meantime he told me about the Multiple Sclerosis Society Website to learn more (more than he could tell me/give me there). He encouraged me to educate myself and HE was going to do some more homework on ME and my case and re-look at my file.

Has anyone ever weighed the pros and cons about delaying starting a DMD? and have any of you made the choice on your own and decided to start the treatment despite being stable with your MS?

Thanks for your support.

I have never been so supported by a doc in my life....it is really nice..;o)

Jibs

[jibjen]

Thanks Mand,

I am sorry you did not have this opportunity. I am looking forward to learning more and making this decision together with my doc, with his support or course. I feel confident at this point that this is the choice to make for me.

I hope you can enjoy the Holidays as well. Thanks for your input.

Jibs

[Mand125]

Hi there

Your doc sounds great. The only advice I can offer is that I wish I had started my DMD when I was still "stable". Unfortunately here in the UK that wasn't likely to happen.

Good luck with your decision and enjoy the holiday season.

Mand

[jibjen]

Hello Mike and shell,

Thanks for your posts, Mike, I am hoping my insurance will cover this.I will look into this . it has been a long time time waiting for an answer and it seems to be a refleif for me to know I have a name for what ails me.

I have alot of sensory issues rather than visible or physical issues at the moment so really some people are looking at me and saying (you look fine)

If I could only explain to them how I really feel, but even that seems to be to much energy for me to do.

Shell, he mentioned that it would be Avonex (sp) he would ecommend and it would be weekly injections. so this is what he has in mind for a plan..

I am glad I have this doc too. I told him I trust him..and if he has any doubt in his mind when we meet again, I will listen to him. He did order a few more blood tests prior to my exam which he said he would do, just to look at a few more things.

Until January, I have the peace of mind I need for now knowing I can begin treatment for this and begin living my life again instead of waiting for a "bomb" to drop in my lap.

Thanks All.
Jibs

[Mike_Shuswap]

Hi Jibby,

things are really moving along for you, and that's a good thing.

You asked for pros and cons re delaying starting a DMD......hmmmm.......

considreing your Doc thinks you have MS, the only pro I can think of for delaying is the financial aspect, and if your insurance covers enough of the cost that you can comfortably afford it, this is a non-issue.

I was going to give you some really good advise here, but I can't seem to find the words.

Anyway, I'm pleased that you're in good hands with your Doc now.

Mike

[sllowe]

:) Jibsy,

I'll dig for some discussions for you - we have LOTS!

For starters, thinking about your lifestyle and if what type of injection schedule you would stick to...i.e., once a week, 3 x's a week, or daily.

Stability is good, however, as I know you already know, early treatment is best! So while the future course is unknown, taking a med - even if you have to change at some point is the best step towards minimizing relapses and progression. I'd have thought differently about this doc if stable meant - no treatment. But, you have a keeper! Yay!

Some day the doctors will be able to say more about what med to pick based on the individual. They are discovering biomarkers that show what med a person may respond best to. So, our future is bright where disease modifiers are concerned - and it frankly excites me!

I'm on Rebif - I do well with it - I'll bump some post for you now :)

I'm glad for you Jibsy to be able to treat this disease :)
-Shell

[jibjen]

Hello,

Thanks everyone for your positive feedback and encouragement. I have to say if it was not for your willingness to give your time and  advice to my posts in the past, I probably wouldn't have had the courage to ask the questions I did at my appt.

You all have given me the knowledge I need to make my appt. with my doc more informative and beneficial for myself.

I appreciate you all!

Thanks again!

Jibs

[DebDJ]

Dear Jibs-
I am SOOOOO happy to hear about your positive visit w/the neuro!!! May I please go to your doc too?!?!?!
God bless you and believe in yourself. Listen to your "gut" and you WILL make the right decision about the meds. You are very intelligent and now it is time to be confident in your ability to make proper decisions about your treatment after you have done your homework through research.
Again, I am SO happy you have such a great doc!!!
Keep looking UP!
Dee

[anon07072023]

My insurance covers all of my prescription except $40 for my 3 months supply (total of $11K+).  And then I signed onto the shared commitment program with shared solutions (for Copaxone) - so because of that, then I don't even have to pay my co-pay either.

[jibjen]

Hi,

Not sure why he chose that..I will ask him that too. $4000..wow..I know everyone is different with insurance but doesn't insurance cover something?

I do have insurance and already checked my Insurance and it is a preferred med so it should cover some of it..

I know what you mean about progression. I don't want to find out too late ;o)

Thanks Jibs..I am so happy I have a good doc..I actually just got a letter that he wants to run some bloodwork a week prior to my appt. He did mention he would want to check a few thinngs...

[jibjen]

Hi Julie,

I have to admit I was never able to speak to my former nuero that way. This doctor is so open and honest with me.It really makes a difference

When I decided to go for a second opinion, which took me a while because I am very softspoken and kind of a push over, I told myself I was going to be sure I would ask more questions and be more about "me". I liked him the first appt. we met.

I am comfortable being honest about how I am feeling, whether it seems to make sense or not.

He was certainly not afraid to tell me "I beleive you have MS" from the very first apponitment. He did not hide anything. I liked that.

I also learned alot from this forum about being an advocate for myself !

I hope we can come to the right decision together that will help me. I am sure we will.

Thanks so much, but for now at least I can feel at peace for the Holiday Season knowing that I can re-focus on this after. I feel validated for once in 3 years.

Jibs

[anon07072023]

I wonder why your neuro is suggesting Avonex and not one of the other DMDs, like Copaxone?

You can be perceived as being stable, when maybe you aren't really stable. A lot of the damage that MS does is in the grey matter. Normal MRIs don't pick up these types of lesions.  It's hard to really know if you're progressing or not.

I would get on a DMD if I were you. Especially if you have insurance to cover it.  I take Copaxone and it costs almost $4000 a month.  

I'm glad that you have found a good neuro. That's always nice to here.

Take care,
Kelly

[Sarahsmom46]

I have to say that what really caught my eye in your post is how proactive you were in telling the doctor that you would rather be on a drug so you wouldn't have to worry about progression.  And better, he listened to you.  

You have learned a lot about MS already, enough to know that DMDs are our only hope to slow progression regardless of whether you are stable now or not.  However, it is still a very important and personal decision.  I'm sure you will both make a decision soon that will be what's best for you personally.  

I like you neuro's approach and your ability to advocate for yourself will serve you well in this situation.  

Take good care.

Julie

[Guitar_grrrl]

I'm glad you're moving forward with DMDs.  If I may make a suggestion, take your Avonex late in the afternoon or early evening with some Ibuprofen (aka Motrin, Advil), and if you still have any "flu" like side effects in the am,take a little more Ibuprofen.  You'll probably be good to go from there.  Good luck!

[jibjen]

Thanks Lulu,

They do exist, and I feel blessed. He was so open to discussing this with me despite my stability right now. he explained everything to me and encouraged me to educate myself as much as possible about MS and Avonex. We both want to make the right choices "together.

I will read up on it in more details

Thanks

Jibs

[Lulu54]

How wonderful to read this testimony to good doctors. They do exist out there and I'm glad you have found one.

I'm sure others will have comments about your main question, but for me there was never any question that I should be on some DMD.  My msologist's view is it is not acceptable to take the gamble and do nothing.

I think if you research Avonex you will find the long term safety record is very good, but I can't quote you numbers.  In fact all of the CRABs have proven records.  It is the newer drugs (Gilenya, Tysabri) that have unanswered questions about long term use.

Good luck with the decision -

Lulu