Update

[vamanos]

There is something to be said for real, expert medical knowledge. It was great visiting with my doctor. He is knowledgable and easy to talk to.

Alright. So, he told me that even though I meet the McDonald criteria for dx, he wanted to see just one more lesion before putting me on a dmd. He said "I personally want to see one more lesion before we diagnose this as m.s"

He said dmd's are not without consequences, and that he is reticent to  prescribe them unless he is 110% sure it is called for.

I appreciate this about my neuro. He is veeeery thorough. He did say that he would bet $1000 I have a couple of new lesions...

He wants me to consider a couple of dmd's over the weekend.  I am getting the MRI in 2 hours.

[sllowe]

Good job!!!!  Sounds like you definitely have a keeper there ;)

[supermum_ms]

Oh whilst i was looking for something else i fell over this research paper on the effectiveness of DMD's, i haven't read it yet so can't comment on how easy or good a read it is but i thought i'd pass it along anyway.

http://www.direct-ms.org/pdf/DrugsMS/Drug%20effectiveness%20MS%20Neurogy%2007.pdf

Cheers.....JJ

[supermum_ms]

I'm a firm believer in the benefits of getting onto a DMD as early as possible, not only is there a plethera of scientific research that supports the use of DMD's but there's a lot of anacdotal too. Medscape is a really good research based medical site, thats well worth joining and its free so all its going to cost you is your time :o)

"I wonder sometimes if the dmd's do much in the long run" its actually the DMD's that gives you a 33% fighting chance of changing the course and or slowing it down. They are not perfect like any medication, its always a good idea though to keep in mind what is more likely to happen (for any disease), if you choose to only treat the sx's and not the disease. Prior to MS DMD's becoming available, the research history of MS was not very good, disability ratings where much much higher.

Today, because of DMD's the out come is a lot more promising, pwMS more often than not, do live 'relatively' normal lives dispite them having MS. Personally, if i had known all the odd things that visited and revisited me over the last 20 yrs were MS and that there was even a 'remote posibility' that i would one day, walk like a string puppet along with every else that is my now norm, i'd be begging my younger self to be more proactive with my future health. In fairness there is no way to tell if it all wouldn't of happened to me anyway but for sure doing nothing definitely didn't do me any favors.

Do some research, ask as many questions as you have too and i'm sure in the end, you'll make the desicion that you feel most comfortable with, which ever direction that might be, it will be the right one for you.

Cheers........JJ      

[JaneK1975]

You're doing the right thing to think this through without jumping to any conclusions one way or the other. I am on Copaxone and I just had my 6-month follow up a couple weeks ago. I think you have to be on a DMD for at least a year (maybe even more) to really know if it's working as far as reducing disease progression. My diagnosis MRI had more than 9 lesions in each hemisphere and one spinal lesion. My 6-month MRI showed additional lesions (I don't know how many yet). I will finally know whether Copaxone is helping with disease progression when I have another MRI 6 months from now and can compare it to the first two MRI's. As far as symptoms, my previous flares were 1 to 2 years apart, so in order to know whether Copaxone is reducing the frequency of my flares, I'd have to wait another year or more...

Whatever route you choose to take, please know that we are here for you and will support you in your decision. There are no easy answers with this disease. As long as you make the decision from your heart, it will be the right one. Best wishes to you.

- Jane

[vamanos]

I had the MRI today and he will contact me early next week with the results, so I feel comfortable with his desire to wait to officially dx until this MRI comes in. He just wants more information.

Tomas: I am going to read up on copaxone. It sounds like an effective dmd for those who respond to it...

Jane: Good points. It is about the long run. How are dmd's working for you so far?

Sllowe: On one hand, I am glad he is being cautious instead of haphazardly diagnosing me, yet your point is a good one: if he agrees with the criteria being met (and he does) then what do we do if NO lesions show up? Let me get sicker? I think not.

(I did show my doc the mimic article you posted (thanks)--he looked at it and told me that I had "done my homework." I told him that I wondered if Lyme might be my issue, not ms. He did not seem to think so, but I felt better for asking about it.)

He did talk at great length about the dmd's and the negative effects that come along with them--but he also said they are a godsend in many ways; that his wife uses them for her m.s. I do think he is just being cautious. He has to consider that I have a negative csf result...that I have lupus, etc.  Even though the criteria seem cut and dry on paper, in practice they are more complicated (so I have read).

Just since July, I have developed more problems: gait issues, vision issues, and the worsening of muscle spasms, just to name a few.

(An aside: I thought I was going to die from the heat during the damn MRI. Never again will I have the thoracic MRI scan, I tell you what.)

[sllowe]

Hi there,

Glad you are happy with your appt.., and trust your doc.
If this doc is confident with MS as dx, then it would not be in your best interest to wait on more lesions to start a disease modifier.

The consequence of untreated MS can be far greater than medicine that can be stopped if there are complications.

I hope the new imaging further tells the tale for you :)
shell

[JaneK1975]

The entire point of the DMD's is to change things in the long run. In fact, the only thing they're proven to do is make our long run better than it would be without them. The scientific proof is there, but of course that doesn't automatically make it an easy decision to go one one.

There is great individual variation in response to any particular DMD, and doctor's don't know why yet. One person with very severe symptoms may find that Copaxone works well in diminishing the severity and frequency of relapses, while another may find that only Tysabri helps. This is why monitoring disease progression while on a DMD is important. It's always about which one works best for YOU, not which one works best in general.

I'm really glad to hear that you're happy with your doc. That's the best feeling, to know that you're getting the best care you could hope for.

Best,
Jane

[tomas2729]

I am not on any interferon meds. My doc is trying me on Copaxone first. In the event that it doesn't work, interferons are where I'm headed. The drugs really do slow the MS progression down. Some are more effective than others. The problem that you run into is the more effective they are the harder on your body they can be. At the end of the day you are going to have to trust your doc on what will be best for you.

None of this has been fun for me so I can only imagine what others with MS go through on a day to day basis. I am really glad that little old me could be of any encouragement at all.

[vamanos]

I wonder sometimes if the dmd's do much in the long run. So much of what I read about them is confusing. Are you on interferon, Tom?
Thanks for the support and encouragement!

[tomas2729]

Sounds like you have a great doc.....

From what I know, Copaxone is the Mildest of all of the drugs. The downside is its a shot everyday. The list of side effects of Copaxone seem way more managable than the interferon 1a and 1b meds.

I hope everything goes well with your scan.

Best,

Tom

[vamanos]

Forgot to add: he said that my babinski is positive and that I developed problems that I did not have in July. He said that I seem to be getting hit pretty hard. He said that he would like to see this relent sooner rather than later ( as would I)....
I have meds for fatigue, muscle issues and pain.