I am so sorry to read your post... what DMD did you try? The DMD itself won't help with existing symptoms but their function is to delay, stop or inhibit the progression of lesion growth.
There are supportive meds like valium, baclofen, lyrica, etc that can help with symptoms. The suggestion of seeing a pain management doc is awesome thought. You also can consider alternative therapies like acupuncture, reflexology.... diet might play a role for symptoms too. Think about keeping a journal and track everyday what you eat, where you were, the weather and even what you wore. You might find a pattern that something you eat triggers pain the next day or something similar.
I hope you are feeling better today!
Just understand progression with MS happens with or with out symptoms and once the damage is done you can't turn it back by going back on a DMD. No one knows what MS will do to any of us. It is a trade of symptoms from the DMDs versus the progression of MS.
We are dealing with serious illness and the drugs can have side effects. There are so many choices. With spinal lesions you do not want to chance it.
Alex
Hi and a warm welcome from me,
Okay firstly, you are young (25) and i'm sure like any 25 year old, you've got way too many dreams and life plans..........you can do it all, yes even with MS!
Disease modifying drugs have changed long term MS outcomes, DMD's target the disease it's self and change the course of the disease, slow it down, reduce relapses and therefore actually reduce your disability levels. Symptom treatments are getting better and more tailored to specific issues than ever before.
You might want to consider if going to see a pain clinic would be a good idea, if what you've tried isn't working. Pain clinics often really do help nutt out the right treatment plan, that specifically works best for the individual. There are a few different types of things that could be going on with your full body spasms, it could be myoclonic jerks or may be even something like your startle reflex, the thing is, there are medications that will help this specifically and if your pain is more muscle spasticity, it would also help reduce your pain too....
You have choices today, that would not of been available to you only a few years ago. Choose to fight........if one medication isn't right for you, then keep trying them until you find one or a combination that does, don't give up!
Change your tomorrows and live all your dreams :o)
Hugs.........JJ
Hi there and welcome to the MS Community!
I am sorry to hear everything you are going through but you have found a wonderful group of people here that will give you well informed feedback, honest answers and are generally a good bunch of people either living with MS or in the diagnostic process aka limboland.
I am not sure what DMD you have already trialled but I don't think you can judge all DMD and their possible side effects by only one you've tried. I have had RA for a long time and I now have MS but I started DMD when I was younger as my RA was destroying my body rapidly. My DMD I take now is used in both conditions. I took lots of DMD's before I found one that worked and didn't cause too many side effects.
I am a strong believer in taking a disease modyifying drug early on as this can alter the course of your MS bug you do need to find the right one for you. Unfortunately you have been dx'd with a chronic progressive condition which means you have to look out for your own future because the decisions you make now can have a big affect on what your future brings.
This is my opinion only and taking a DMD is a choice only you can make. I'm sure many others will chime in with their opinions on this subject as well as this discussion has been brought up constantly.
I'm really sorry about your experience so far but please don't close your mind to what else is out there for you based on this one experience.
Take care,
Karry.