what were you told ?

[kwhompus]

What were you told about your DMT. I'm reading here that some of us believed or were lead to believe that we were going to get better with treatments. I for one had high hopes of a better life than the present one. We are all hoping and praying for that to happen, but once the damage is done they can only slow the bleeding. What are we looking for and what can truly be expected.?

[twooldcrows]

i was never told i would get better ,they would only slow down the process of it ...i myself have improved since changing the meds but like i said that is me ...good luck and look to the future for you still have a life it is just different ...not promised to be good for ever in any life even with out a disease...love and happiness enjoy to the best that you can ...

[Sandydemop]

I was told my symptoms were “benign”. Originally. And no matter what don’t stop the meds. What can you expect? A slow decline. If you stay in remission maybe no decline. My best recommendation is to look at your food take out any toxins and exercise every single day

[starlight5 in reply to Sandydemop]

I agree that daily stretching is probably the most important thing. I quit for some time and now simple stretching is so painful. I lie flat on my back on the floor to simulate standing up straight. It is amazing how painful it can be. My calves, quads, hips and lower back are so tight ...

[Sandydemop in reply to starlight5]

agreed. it doesn't take the body long to get used to inactivity. Someone told me Motion is lotion and I believe it.

[starlight5 in reply to Sandydemop]

I've never heard that saying before. How true

[Sandydemop in reply to starlight5]

Yes, we have many rhymes Can't think of any at this late hour but we have them. good n ight.

[Violonchelo in reply to Sandydemop]

What toxins , for example?

[Sandydemop in reply to Violonchelo]

toxins like sugar, flour, dairy and red meat. These add inflammation to the body. Getting them out of my system helped me move more easily. You could just try getting rid of one of these for a week and see how it changes how you feel, if anything.

[Violonchelo in reply to Sandydemop]

Is bad the milk?

[Sandydemop in reply to Violonchelo]

dairy can be inflammatory. I use almond milk. Other people use oatmilk.

[Violonchelo in reply to Sandydemop]

Thanks 🙏 I can’t live without milk normal for defences. But also I knew that somebody with cancer used take almond milk .What happens with somebody that has MS in relation with the Inflammatory subject? What can happen ?

Is not better fresh milk ? Is fresh milk also inflammatory?

[Sandydemop in reply to Violonchelo]

Hi Violonchelo Milk, Butter, yogurt, cheese all of these from a cow are inflammatory. Beef too. That means they make your joints hurt. When i switched to milk made from nuts like almond milk I felt much better physically. Try it out for a week and see if you feel differently. Do you have any pain in your joints?

[Violonchelo in reply to Sandydemop]

Really Thanks . Yes. Once I had pain in the femur, maybe because of sandals I don’t know. Pain in the legs or arms , not usually. I usually make the perchase And maybe I have pain because of this . I don’t know.

But milk in the morning And sometimes in the afternoon, or yogurt in the morning , afternoon And evening, or cheese in the morning And lunch or dinner.

But I eat usually nuts.

Joints are legs And arms ?

[Sandydemop in reply to Violonchelo]

joints are knees, elbows, wrists. Try using dairy substitutes for a week if you feel a need for those types of foods like almond milk or soy cheese. If you paste this link you can read an article about it: medicalnewstoday.com/articl...

[Sandydemop in reply to Violonchelo]

and shoulders

[Sandydemop in reply to Violonchelo]

sounds like you use a lot of dairy.

[starlight5]

My hopes are to maintain where I am currently at, or a very, very slow decline.

My expectation is a continued decline....

[Neworleanslady]

My doc said that many times when a person gets older MS often becomes less noticeable and less active (SOMEtimes). I’m praying for that to happen to me and for that to come sooner than later (not old age but the MS part)

[Violonchelo]

I hope a pill only at day for all. As alone tratament. If one is the better, they have to say us. I have Rebif 44 inyectable 3times a week since 2005.

[goatgal]

After a long time pondering this, I think most neuros have chosen their specialty because they are most interested in its scientific/medical/clinical aspects. By nature, that is their personality and education, these specialists are not as interested in the common humanity of their patients. Consequently, they may struggle with the need many of us MSers have for understanding our baffling disease. Among all the neuros I've seen, I found only one who was willing to help me look ahead, who indicated interest in who I am. Some have been blunt to the point of rudeness, shutting off questions, unwilling to listen. I believe in the science they hold in their heads, but I don't much like them as people.

I would welcome an honest conversation with a neuro, one who was willing to see me and help me understand the interplay between the effect of age and MS damage. I don't need reassurance or a prediction but a road map for the future would be very, very helpful.

[Amore55 in reply to goatgal]

I agree. I have found the same very clinical nature of neuros to be challenging. I have been fortunate to have had two very fine, warm doctors in my past team. But they were the exceptions. They saw the whole person.

I hope you are well goatgal, I need to get back to you. Life has taken over, I am so sorry.

[mrsmike9 in reply to goatgal]

My neuro is interested in my disease but not with me. That's why I'm so glad to be seen by his NP. She's great!

[goatgal in reply to mrsmike9]

That seems pretty typical of neuros. It would be nice to have everything in one package, but that's rare. I'm glad you have a NP who shows interest.

[cindyrn68]

I was told any improvement would likely be coincidental and that the DMT was to slow progression.

[kdali]

Not much. I had looked into each one before starting and knew the effectiveness they offered to most people, and that’s what I hope for.

[Midsomer1]

I don't expect miracles from my DMT. I was never told I would get better with treatment. I have been on two different DMTs since 2015. MRIs have come back stable with no new lesions every year. I am happy with that.

[Mollyabigail]

I was told that I would feel like a new person. Sorry, but I have to call a B. S. on that one! I'm walking a wee bit better, but that is the only improvement I see. It is a rural area & few neurologists around, but I would very much like to get a different doctor.

[rjoneslaw]

I was told to read up on the dmt and decide which i wanted to be

[JTZES]

That's right and your current lesions could worsen. All we can do is hope for improvements in the field

[falalalala]

I was prescribed Copaxone and was told it might help.Not cure, just "help".

It helped me fall to the floor unable to move or breathe.

She then told me to stop taking it.

"Thanks, doc. How much do I owe you?"

[mrsmike9]

I wasn't told anything except how it was taken. I never thought it would make me better, just hopefully keep it from getting worse, which is fine with me!

[sashaming1]

I was told that stopping disease progression seems to be the best that can be expected. However, I have heard of some instances where some MS issues were reversed (Lemtrada?).