alexab 28/02/18
Last reply 3 months ago
feeling kind of terrified

Hello all,
Diagnosed with MS in June of 2017, started on copaxone 20mg very soon after. My initial episode lasted a good 1.5 months, with the intense symptoms (confusion, depth perception/balance issues, severe numbness/tingling in all extremities and limbs) lasted about 3 weeks, then slight residual tingling and of course lots of fatigue stayed for 3 more. Second episode which lasted longer but was a little less intense started before the holidays and took almost 2 months to subside. Early February I thought things were getting better and I was pretty hopeful, getting ready to go back to work and such, but this past Monday I had a terrifying and very new experience. I had leg and arm tingles, with a total numbness of on arm, that came on very suddenly. About an hour and a half later, when I stood up, I had this feeling like there was an invisible weight pushing down on me and making my whole body heavy and hard to move. My legs felt weak and wobbly and I had trouble walking. I went the the emergency and they tested my reflexes, which they said were good. They said they would push for my MRI to be done sooner (I am scheduled to have a spinal and a second cranial) The heavy feeling in my torso/shoulders has gone, and now I only have heaviness and weakness in my legs (it’s not as bad as the first time) and tingles/numbness. I asked if it was too early to consider other medication and the doctor said yes. I’m so terrified, it is a completely new symptom for me. I am trying to stay positive and optimistic, but I just keep breaking out into tears and overcome with fear of the unknown and what is to come.

Add categories

Browse categories and add by clicking on them

You can remove current categories below by clicking the ‘x’.

3 months ago


Where are you based? If you are in the UK I would definitely be pushing for stronger meds. It sounds like you have had two clear relapses in a year – and now potentially a third (whilst on a moderately effective first line drug). In the UK this should be enough to qualify you to your choice from the full medicine cabinet. Take a look at the MD decisions trust page and push your neuro and if he says “no” don’t be afraid to ask “why not”?

Really hoping you get some respite from your current symptoms. Please try not to stress – easier to say than do I know- but it can exacerbate things.

Good luck xx

3 months ago

Apologies – I’ve just clicked into your profile and seen you are from Montreal. Hoping one of the other Canadian bods Witt more experience comes to help soon. Look after yourself. Xx

3 months ago

@alexab , I agree with @katy79, the Copaxone is not working. This needs to be reviewed now.

3 months ago

Thanks for the input guys. The neuro I have now is a general neurologist, and I do not think he has a lot of experience with ms, if any. He is cocky and a medical teacher, and to be honest I get the impression he kind of shows off in front of his interns (I’m not trying to be rude, this is just the impression I get based on my experience with him) I am hopefully in the process of changing- the request has been sent in, but I have to wait for a phone call for an appointment for the MS specialist. I asked why not and he just answered it’s too soon. Even when I brought up I’ve had 3 major episodes in 9 months. I don’t know what else to do. I’m trying not to stress out too much but I’m so scared.

3 months ago

@alexab , you need to be assertive, but polite.

Three episodes when you’re on a Dsiease Modifying Therapy (DMT), then the therapy needs to be stepped up. It’s your body and your health that they’re gambling with!

Please do try and control the stress. It’s a non-productive emotion that has been known to cause relapses.

Post Comment

You must be logged in to reply to this topic.