Getting scared

[Desicat674]

Mines sort of a question but not really.

About a year ago roughly I was diagnosed with MS after a lesson became active in my spine and for the three days leading upto the hospital visit, parts of my body had been going completely numb. they gave me heavy dose of steroids that I had to go to 3 pharmacies to get filled out XD I remember that. but I got better, however i still have limited function in my hands and legs. The doctor told me I had MS. I was very scared, mostly on how the hospital handled it. I was told I had 9 leasons in 8 in my brain but all that was wrong was i would twitch occasionally and the numbness. About two months ago I decided to go off my medication, I had been it for 9 months and that was probably the worst 9 months of my life, my body didn't a just to the side effects and there were so many, i mostly remember just being unable to get out of bed and in so much pain that i couldn't be touched, the doctors and I tried other medications, but it was the same effect pretty much.

after the two months I've been off, I've been able to get out of bed, active, been able to do thing. I've been happy but the slight twitching is getting worse, to full on spasms. when my fiance touches me half the time I spasm full body now. my memory is starting to go, "I forgot" has probably become one of my most common phrases used, now. it's starting to scare me to be honest.

I'm scared to be on the medications which make me hurt and not want to do anything and I'm scared of getting worse. Do you think I made the right choice? and yes, I have talked to the doctor who just keeps saying "we can try even more medications!" and honestly, I don't want to. I don't really know what I'm saying, I just need to see things from the perspective of some people who understand what I'm going through.

[jenphilly]

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!

[HVAC]

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

[supermum_ms]

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

[karryon55]

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.