I’ve had MS (relapse & remitting) for around 4 years, at first my symptoms lasted around 2 months but then settled for about 12 months, I even doubted my diagnosis because everything seem “normal”, however over the last 18 months my symptoms have returned and never really disappeared, some days worse than others, far worse after exerting myself.
One such symptom is a surge like sensation in my thighs when I’m walking, which throws my pace and stride off, when I reported this to my MS clinic they put me on Carbamazapine building up 200mg daily, I’m on no other treatment for the MS.
My question is regarding the Carbamazapine as I’ve noticed my symptoms and walking seemed worse, so I’ve now come off 3 days ago and definitely feel a bit better.
Has anyone else found that Carbamazapine makes their symptoms worse ?
I’ve informed the clinic about my decision to come off the drug and waiting for them to get back to me regarding some other drug for these leg surges, but the moment I’m confident that Carbamazapine makes MS symptoms worse, at least it did in my case even at the small dose I was on.
last april i had a surge type feeling which spread through my body after 80 - 100 yards. it would last for about 10 mins then wear off again. it affected my ability to walk whilst having the surge and my balance then things improved until the next 100 yards. i had iv steroids & recovered in 3 months although i am definately sliwer at walking now - not sure why though. no other meds. This relapsed pushed me to investigate my vitamid d levels, which were very low and i also pushed for DMDs and am now on tecfidera, with no further symptoms.
I took a course and to good effect when a relapse was giving me such horrid stabbing pains that I was really struggling. The drug completely sand-bagged me and I spent much of the week crashed out in bed, but it did deal with the pain, so it was well worth it. I certainly would take it again like a shot if I was in bad neuropathic pain, but not for anything less unpleasant than that. For me, it is in the same category as high-dose steroids: nothing like it if that’s what you need, but you don’t reach for it unless you have to.
I been looking at a good few sites on regarding Carbamazapine being used for MS symptoms, and there are some that say it makes symptoms worse, but is very effective for neuropathic pain.
I also read that there were case studies here in the UK and USA on a number of MS sufferers who almost instantly had worsening symptoms whilst taking it, but then found their symptoms remitted within days of stopping the drug.
Personally after trying it for 3 months I’ve felt no improvement the “surge” type feelings in my legs, but do feel that my strength, balance and overall walking distance deteriorated whilst taking Carbamazapine.
I’m taking D3 @ 5000units daily, which my consultant advised when first diagnosed, on my last check my levels were around the 200 mark, which I believe is over the “normal level”, but he (consultant) recommended staying @ 5000 units to try and push the level up even more.
I was told by my MS clinic that no offer of DMD’s is possible until you’ve had 3 relapse’s in 12 months ?
I’ve not had a full blown relapse in 3 years, but my symptoms are worse over the last 18 months, if that makes sense, a gradual and more often worsening, is the only way I can explain it, however, my clinic still think I’m at the Relapse & Remitting stage, and its the over doing things or not pacing myself that brings on the symptoms…
I still get around, some what slower, and I’m definitely far worse if I try to walk too far or over do things, I’m simply wiped out and have to rest for a while before I can go on a bit further, but even then unless I rest for a fair bit I basically lose the use of my left leg, it sort of just gives in and wont move fluently with my right leg, it’s a very strange feeling.
I’m waiting for my clinic to get in touch regarding me coming off carbamazepine, so I’ll mention tecfidera when they next contact me .
hi, i hadnt had a full blown relapse for some time just small things, like numbness and also sharp stabbing pains, linked to a previous relapse 10 years ago, but i pushed for dmds i was told that the NICE guidelines had changed and once you had a diagnosis you were eligble for dmds. after all who wants their next relapse to cause untold damage whwn there are drugs available to prevent relapses once you have your diagnosis. I would contacr youe MS nurse to discuss your new symptoms. Good luck. Sharon x
Im on carbamazapine for nuralgia and wouldnt be with out it keeps nuralgia at bay. Im usually bad with some medications like pregablin had to come off that as was loosing coordination all the time. But not had any probs with carbamazipine.