Hello this is my first time writing on this site though I’ve been reading it regularly. At the moment 2 neurologists - one an MS specialist- have diagnosed me with clinically probable RRMS. My journey to diagnosis has been complicated as I cannot have an MRI. I have had a myriad of symptoms for 8 months eg dropped left foot (recovered), dysesthesia in my left hand (improved but not completely), left optic neuritis (improved but have optic atrophy), speech problems (intermittent stuttering and ‘stuck’ words), dizziness, etc etc. I am now using a walking stick as walking is difficult, it’s like walking in a snow drift very very slowly! This last symptom doesn’t seem to be improving. I’m doing core exercises and walking as much as I can with the stick to get as fit as I can and to treasure every step. The neuro has given me two DMDs to look at Lemtrada and Tecifidera before my next appt, which is on Tuesday. I’m also having another CT scan this time with dye which will hopefully make it clearer for the neuro and neuroradiologist to see. I just wanted to ask if anyone else with RRMS is having symptoms that don’t go away like my walking problem or if anyone knew how I could improve it?
I dont have a dx myself yet but I have issues with walking. My dropped foot has come on slowly and I fear here to stay. If your dropped foot has improved then hopefully your walking will improve too. I am wondering if the relapse has given you spacticity in your legs which can cause the slow walking. There are drugs for spasticity such as baclofen or Tizanadine and your GP should be able to give them to you.
Have they offered you a LP especially as you cant have an MRI ?
Hello Moyna, thank you for replying. Sorry that you have issues with walking too. I’ve had a lot of tests including LP ( which was negative) and VEP(which was positive). I saw my MS neuro today and she confirmed clinically likely MS and I will now be treated with Tecifedera. In the meantime she has prescribed steroids to try and reduce inflammation and improve my walking- which is due to left side weakness.
hopefully your dropped foot will improve. Are you seeing a physio? They were fab for me- exercises and a foot brace? It took a few weeks but my foot recovered. The difference the brace made was incredible. This time with the weakness the physio gave me different exercises and a walking stick. I have since bought my own colourful one to cheer me up and once again this has made a huge difference. Hopefully I will go into remission and recover completely like before with the dropped foot but if not at least I can still walk.
have you had any other symptoms? Are you getting support? I hope so.
The journey to diagnosis has been long and whilst none of us want this illness it’s a relief to know you’re not going mad.
I think you are already doing the best things you can to look after your mobility. Core exercises are great because they give you the best chance of keeping your gait as normal as possible and minimising unnatural mechanical stresses and strains, even if your legs aren’t working brilliantly. One idea:if your walking is very slow, then you are going to struggle to get as much proper aerobic exercise as you need for general cardiovascular health and fitness. Many of us find that an exercise bike or rowing machine or similar are great for this - people with MS tend to find that leg strength pushing down (as in cycling) is OK even when leg strength lifting up (as in walking or running) is not OK. So you might like to consider something like that for your general health and strength and the general feel-good that comes from proper exercise.
As for the drugs: well, my philosophy has always been to go for the most potent drug that my condition warrants. Lemtrada is a very effective drug and one of the most powerful around. I tend to ask the neurologist what he/she would go for in my shoes. They’re the experts (both in MS in general and in your particular case), and they generally try very hard to give the best advice they can.
Thanks Alison, great advice I will definitely try the bike! (I’m rubbish on the rowing machine- lol!)
My specialist is starting me with Tecifedera as she explained that with Lemtrada there’s no going back. I think this is just in case the diagnosis is wrong. If Tecifedera doesn’t work they will review. It’s all been a bit overwhelming so quite hard to remember all that was said.