Symptoms

[kandykone1]

Can you still have symptoms while on DMT? Not a relapse but one day come and go weakness/pain etc?

Does that mean it’s not working if you do? So confused again!

[RoyceNewton]

I believe so YES

[kandykone1 in reply to RoyceNewton]

I realized I asked too many questions in my post. Youre saying yes to which Q?

[RoyceNewton in reply to kandykone1]

Can you still have syptoms with DMT, yes most certainly they only reduce exacerbations the4 symptoms still exist. Something as sill as a hot long shower or bath can make symptoms worse, Look into the old hot bath test doctors used to do.

[kdali]

Yes, yes, no.

Yep, all day every day, but a different crap shoot every morning.

The medications are suppose to reduce your relapse rate by a certain percentage. None are 💯 effective against relapses, and some are more effective than others in the same person.

The best way to know if a medication is working is to see the MRI every year (no new lesions and no active disease or stable disease are all good things to read in the impression section of the report). Do get your report, it’s your brain. The other way to know of a medication is working is to have a relapse! Some MDs will not fail you off a drug until you have had two relapses while on therapy (meaning you were at a therapeutic level during said period/not counting the months you were off or were waiting for blood levels of the drug to come up).

My call in orders for a relapse are: new symptoms or worsening old symptoms. My go to ER orders are: loss of function, such as a limb, vision, bowel or bladder.

I hope this helps!

[goatgal]

My best guess is that you can have the come and go symptoms while on a DMT because DMTs are prescribed to prevent relapses. The come and go symptoms are not considered relapses. But, the best answer will come from your neurologist, Ask him or her, and describe what is happening.

The majority of my symptoms are the come and go kind. If my understanding of my MS is accurate, these happen with a temporary interruption of the signals between muscles and brain (sort of like the flickering of an electric light when somewhere down the line, a branch touches the wire, interrupting the current momentarily).

[MarkUpnorth]

During my years of DMT's, YES, you continue to get relapses. You continue to have symptoms, including those that don't, and won't ever go away once you get them. DMT's are to hopefully reduce what you might otherwise get if you didn't take them. BUT, if you start getting flu like symptoms again, and they become regular, definitely talk to your neurologist about it. I had flue like symptoms for years after years of being over the initial typical flu like symptoms,..

also kept getting relapses, the whole time. Just don't think anyone should have to live with flu like symptoms for years like I did. But, maybe some good came out of it? Never got the actual flu again! Did they reduce what I may have otherwise gotten if I never took the DMT's???? No one can tell you. Was it worth all the trouble, money...???? Will never know. I am apparently done with relapses, I 've been told by my neuro. It has been several years now. Symptoms? Yes I have a whole war chest of battle wounds that never go away, BUT don't get worse! Some, are getting a little better!!! So, there's hope!

[rrw5620]

Yes to both. Is sucks, but not much you can do but to control symptoms and stay on a DMT to slow progression down. Were all here for you anytime............

[4fishylady]

For sure, symptoms come and go, thankfully! My Neuro said they should cut down on the number of relapses, but not totally prevent them. He said that no one knows which category of MS you have until time proves which type you have, but on a DMT you should have fewer relapses than you would without one. I have now gone almost a year since my last run of prednisone for a relapse. I do have a symptom or two show up occasionally, but they have not lasted for any period of time to cause me to have to seek treatment. On Tecfidera for 5 years now! Truly thankful for it!

[kandykone1 in reply to 4fishylady]

Love to hear this!

[Fancy1959]

I would simply keep a log of what is going on and call your neurologist and make an appointment to go in and see him or her. Each and every neurologist looks at various happenings of your disease slightly different just as each of us experience them slightly different. Ask them the pertinent questions because they are who you paid the big bucks to to know. The only wisdom or lack thereof I can share with you is that I too some have symptoms that come and go while on DMT. I do what I suggested to you and then speak to my neurologist about it. MS is such a complex disease it would be in my opinion nearly impossible to design a DMT to rain in everybody symptoms because we all very so much and what we experience. The talk to your neurologist. Take a deep breath and do not worry about this. See you in a row ologist and let them explain what is going on. They will help to lighten your load. Until we speak again please take care and remember together we are stronger. Fancy.

[kandykone1 in reply to Fancy1959]

Thank you.

[sashaming1]

I thought I did when I had a fever. Got the fever to leave and the MS sympom did too.

[anaishunter]

You'll still have potential symptoms from existing lesions where the nerves have been damaged. You could potentially have new symptoms from the same existing lesions. But DMT should stop or slow down the creation of new lesions, and the flaring activity of existing ones.

The brain has plasticity. So it's my strong belief that by exercising your brain (physically, mentally) you can build new pathways around the lesions and regain lost function.

Many trauma patients learn to read and speak again by working on their brain and reorganized it over months if not years. There's no reason why us, with ms, can't do the same around lesions. Be hopeful, patient and work hard at it!