Does this sound weird?

[ffjosh]

I will try to make this quick.

Got my 3rd MRI (one year after I was DX August 2011)
I got a little letter saying it has improved (started with 16 lesions)
during this time.......
I have been taking copaxone for a year and recently took my self off of it. The cost and I didn't feel it was effective.
For some reason even though I didnt ask for it they sent me another 3 months worth.

3 months after my MRI Was my DR appt.
with in a week of the appt it changed DRs
This was his "overload" Dr he uses when he is too busy.

She was really nice looked at my MRI (just at letters on a computer screen) and said most of my lesions in the affected area are gone and there is no other active ones.

I asked her how many lesions are gone which are aect ect. She couldn't tell me anything but it improved.

She then told me it looks like the copaxone is working. I told her I stopped taking it

She looked at me funny but didn't say a word about getting back on it.

She also didn't say anything about another MRI. Just to come back in 6 months for a check up.

She was really suprised at the progress I made. She said not only do I look fine but you really are fine.

Been saying for a long time I dont think I have MS and now weird things are happening.

My friend who has MS says she has to get a MRI every year no matter what. (15 years of this)

So do you think im so improved they are just keeping me on the back burning in case something happens, or do you think there hiding something?

Weird to you? Hope it made since.

[SNOOPY]

Hi ffjosh,

No, not weird

I am going to assume your friend with MS takes a DMD. When using a DMD yearly MRIs are common to check on how the DMD is working.

You are not currently taking a DMD so it is possible a MRI might be recommended on an as needed basis.

I have never used a DMD and I don't get yearly MRIs. There really isn't any point in my case. The MRI will not change my decision not to use a DMD and my neuro knows this.

MRIs can improve without the use of DMDs. My 2004 MRI showed numerous (to many to count) c-spine lesions, 2011 showed only 3 c-spine lesions. I added one brain lesion making the total brain lesion count of 3.

Keeping my fingers crossed you continue to do well.

[maitrimama]

Weird?

What sounds weird to me is that you would take yourself off of Copaxone.

[laurasari]

If you are doing well on a dmd why would you get off without further discussion with the dr if you dont like that one there are now choices when i was diagnosed it was a b or c all injectables now we have many choices even 2 oral drugs
good luck whatever you decide

[ffjosh]

So I guess all the lesions in the "effected area" (whatever that means are gone.

All the other lesions in other areas (whatever that means) are dormate.

Im going to get another opinion atleast 2-3 hrs from here.

All the Drs know eachother and my 2nd opinion does not seem serious enough.

[ffjosh]

Hi ffjosh,

No, not weird

I am going to assume your friend with MS takes a DMD. When using a DMD yearly MRIs are common to check on how the DMD is working.

You are not currently taking a DMD so it is possible a MRI might be recommended on an as needed basis.

I have never used a DMD and I don't get yearly MRIs. There really isn't any point in my case. The MRI will not change my decision not to use a DMD and my neuro knows this.

MRIs can improve without the use of DMDs. My 2004 MRI showed numerous (to many to count) c-spine lesions, 2011 showed only 3 c-spine lesions. I added one brain lesion making the total brain lesion count of 3.

Keeping my fingers crossed you continue to do well.

Yes she does

[ffjosh]

What sounds weird to me is that you would take yourself off of Copaxone.

Why? Because I dont feel like pumping my self full of meds I dont think are working?

It took me a month to make a 90% recover
Due to insurance I took zero meds for 3-4 months after my DX
Took copaxone for 3 months before being off of it for 3 months.

Took it for almost a year before taking my self off of it completely and feel better.

Lots of my "MS" issues I was having was corrected with a better diet and exercise.

[maitrimama]

still think it's weird

Going off of Copaxone (or any med you don't think is working) doesn't sound weird. Taking yourself off of a medicine like Copaxone without talking to your doctor (you know that educated, trained professional you have consuldated regarding your medical issue) that sounds weird.

[ffjosh]

Going off of Copaxone (or any med you don't think is working) doesn't sound weird. Taking yourself off of a medicine like Copaxone without talking to your doctor (you know that educated, trained professional you have consuldated regarding your medical issue) that sounds weird.

thanks guess im weird.

[SNOOPY]

What sounds weird to me is that you would take yourself off of Copaxone.

Going off of Copaxone (or any med you don't think is working) doesn't sound weird. Taking yourself off of a medicine like Copaxone without talking to your doctor (you know that educated, trained professional you have consuldated regarding your medical issue) that sounds weird.

maitrimama,

Do you use a DMD?

Those educated trained professionals allow patients to choose which treatment to use. Those same professionals, as well as researches, are still looking for answers about this disease.

The MS treatments might slow progression, might decrease exacerbations and might reduce lesion load. However, there is no guarantee a person will do better off or on a DMD. Some people do better on a DMD, some do better without treatment.

There is still alot of unknowns about this disease and the DMDs.

There is nothing "weird" about someones choice to use, discontinue, or never use a DMD.

I believe in acceptance. Acceptance of a persons choice on what they feel is best for them, to live with MS with or without medication.

[TLC_31]

Why the animosity toward Maitrimama?

The OP, ffjosh, asked for our opinions. Maitrimama and others thought it wasn’t the best choice to stop his Copaxone, especially without a discussion with the doctor. I agree with that assessment. "Weird" is a judgmental word, but ffjosh was the one to use it first.

If he’s used Copaxone for a year (Jan. 2012 to Jan. 2013? The timeline is not clear.) and then has an improved MRI (three months ago?), why not give Copaxone the credit?

Of course, cost and side effects could be reasons to stop, but there are programs to help with cost, and stopping still warrants consultation with his neurologist. I don’t see ffjosh addressing those anyway.

If ffjosh doesn’t think he has MS, then no point seeing the neurologist anymore, right? And if he doesn’t want to even bother to consult with his neurologist, why bother with a bunch of strangers here? Why care what we think? Good luck to him.

And no, an MS patient on a DMD does not have to get an MRI every year “no matter what.” (Just like an MS patient doesn't have to be on a DMD no matter what.) I have no medical training, but I can say that with absolute confidence.

[ffjosh]

lets just forget that I stopped taking the meds. The only reason I do not give it the credit is because I continue to get better while not on it.

Im asking does it sound weird that my DR is not pushing me to keep taking it?

Doesn't it seem there hiding something?

They cant find my MRI, they cant show it to me or show me whats different?

I started going back in time and thinking of what I was doing around the time I got MS. Found some freaky stuff even though its hard to believe it cause my "ms"

At the time I got my MS I was around a lot of pesticides
I also went to mexico months before
some other small details

isnt it weird im totally healed per my dr?

[SNOOPY]

So I guess all the lesions in the "effected area" (whatever that means are gone.

All the other lesions in other areas (whatever that means) are dormate.

She was really nice looked at my MRI (just at letters on a computer screen) and said most of my lesions in the affected area are gone and there is no other active ones.

isnt it weird im totally healed per my dr?

Are you referring to the above quotes when you say your Dr. says you are completely healed? If so, that does not indicate you are completely healed

It is common for lesions to heal and disappear. I went from numerous (too many to count) c-spine lesions to a countable amount (3). None of my lesions are active.

My husband asked my neuro if all of my lesions "disappear does that mean I don't have MS --- answer: No, I will still carry a MS diagnosis

Not sure my answer was helpful or if it is even what you are looking for.

[SNOOPY]

Im asking does it sound weird that my DR is not pushing me to keep taking it?

Doesn't it seem there hiding something?

My answer to both questions would be no.

Non-compliance with the DMDs is not uncommon. A Doctor cannot "push" a patient to take any medication, they can suggest, advise, recommend and strongly recommend. The patient has a right to say no.

[MarkLavelle]

isnt it weird im totally healed per my dr?

Unless they don't believe you've ever had MS, it would be extremely weird for a dr. to say you're "healed" (since that's just not possible). But with MS your symptoms can go away for years at a time.

I'm not too surprised your 'substitute dr.' did not engage you on the DMD question. She probably figured you'd already talked to your primary neuro about it, or just didn't feel it was her place as a mere substitute.

Also, it's not unusual for a doctor to work from an MRI report and not the pictures (and I seriously doubt your pictures are actually lost). The fact is, most docs aren't properly trained to read MRIs anyway...

And finally: Yes, many pesticides are known to cause neurological problems. But I think it's unlikely that would be misdiagnosed as MS by a competent neuro.