@JoWillsher

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JoWillsher

Starting treatment

Hi I've had MS since 1989 and it's been very mild. I've recently had a MRI which shows new lesions, one which is causing low epilepsy. Now started treatment for that. I've also got to start MS treatment. I was going to try Tecfidera. Can anyone give me any advice on whether to try that or injections. Many thanks

Addick

@Addick

I was on daily injections - Copaxone, for a year but my consultant put me on Tecfidera 5 months ago. It's about 20/25% better than Copaxone apparently. It has certainly improved my symptoms. Your Consultant should talk it through with you though.

JoWillsher

@JoWillsher

Thanks for that. Glad it's improving for you. I'm bit worried about the GI side affects. Have you had any ?

AussieKylie

@AussieKylie

How did you go for so many years without treatment? Did you decline treatment previously perhaps? And have you had mri's each year since diagnosis? Im only recently diagnosed so am just interested in how others have progressed

Addick

@Addick

No GI side effects. There will be monitoring of this by my Consultant / MS nurse. Only had the usual red flushing etc but that mainly subsided after 6 weeks.

JoWillsher

@JoWillsher

I only had mild symptoms when first diagnosed, then on and off for 2 years. MRI's didn't show any new lesions, The Dr said to come back if any symptoms came back, which thankfully didn't. About 2 years ago i had more symptoms , had IV steroids, which made it worse. Now MRI is showing new lesions, so time to start treatment. Are you on any medication?

Monica2015

@Monica2015

Hi @jowillsher, firstly a huge congrats at being dx so long ago and staying so well!! Do you have any particular advice as to how you managed it, or was it purely luck? My personal view would not to opt for injections. I only took copaxone for but a few months ten years ago, and was mortified by the impact they had on my figure (shallow I know)! Never again! The impact thereof put me off all DMTs for nearly 11 years until a couple of months ago when I opted for Lemtrada. There is plenty of info on this site if it is of interest to you.

JoWillsher

@JoWillsher

Hi Monica, it was pure luck, I'm lucky to have gone so long without any problems. I think I'm going to start Avonex injections, after talking about it with my MS nurse. My new lesions are giving me epilepsy symptoms, so I have started meds for that, i also have long standing stomach problems .Don't really want to take any more tablets that might make things worse. Sorry you didnt' get on with injections, what impact did it have on you ? What sort of symptoms do you have, mine are mainly sensory, worst part being in my head, foggy, and vague.

JoWillsher

@JoWillsher

Orlando27 ,Sorry to hear that, i do hope Lemtrada helps you. Thanks for the advice.

shopaholic100

@shopaholic100

Wow that's amazing to have gone through soo many years treatment free. I know your post is about treatment options but can I just ask what symptoms did you have which lead to the diagnosis in 1989? And what natural lifestyle habits of yours do you think may have contributed to your great healthy wellbeing? Sorry if I'm asking too much, but I'm just really curious as I got diagnosed this year and I've been doing alot of reading and resesrch.

JoWillsher

@JoWillsher

Hi Shopaholic100, I first noticed numbness and pins and needles on one side of my body just after the birth of my daughter in 1988, at first they thought it was a trapped nerve. After seeing a neuro and having a MRI it was confirmed as benign MS. I had mild pins and needles with pain in my right side on and off over the years, without it getting worse. After regular check ups , without any more symptoms, I was told I didn't need any more reviews unless things changed. Oct 2014 things started to change, pins and needles got worse, in both legs and hands, strange sensation in my face, and vague fuzzy head, I had IV steroids which made things worse, and took ages to recover from. The head Fog ( I've heard it called) got worse. I recently had an other MRI which showed new lesions in my brain, causing low level epilepsy activity, now on meds for that. Just waiting now for DMT treatment to hopefully slow things down. I just think I have been very lucky. I hope I haven't gone on too much. Sorry to hear you have been diagnosed, hope yours is not too bad.In a way I am new to this too.

Tatjana07

@Tatjana07

Hi I have Ms/pr the worst type since 2012 .I have 65 Lesion in my brain and a big lesion on my spine all the way up so I lost my sense of touch in both hands and my balance completely .When the doc diagnosed me he couldn't believe I was still walking . I take no medication only healthy food and RSO every night before bedtime.Its 2015 and I have 0 pain 0 attacks and I'm still walking.At the beginning before I started my healthy lifestyle I had up and down moods,fatigue and pain everywhere ;( Now 3 years later I'm as good as i was before except for my hands .But I improved everything else through yoga.

shopaholic100

@shopaholic100

Hi jowillsher, thanks for your reply. I have experienced almost all of the symptoms you described especially the pain on one side and the face sensation. Mines isn't too bad though as still carry on with my daily duties and I do yoga and I started the swank/ jelinek diet (combined them). I'm on the list for tecfidera although I think the diet is helping.

JoWillsher

@JoWillsher

Hi Shopaholic, I've heard a bit about diet treatment, can you tell me more or where to find out about it? Glad your not too bad, Thanks

JoWillsher

@JoWillsher

So sorry to hear you have so many lesions, well done for coping so well ! What is RSO, ? please tell me more.

Stumbler

@Stumbler

@jowillsher , I believe RSO is Rick Simpson Oil.