Hi, I’m totally new here. I am 32years old and a female.
I had mri scan nearly 7 weeks ago now which showed signs of demyelination on my cervical spine.
Still waiting for a neuro appointment. GP doctor pretty sure it’s MS with my symptoms. I have been to urgent care a few time with symptoms
I am an ultra runner and have an active job. Currently on the sick as my job can be quite physical at times
I am also not able to run like I used to. I am really struggling.
My GP has prescribed me with amitriptyline which has helped ease some symptoms such as burning sensations.
Main thing is my left foot is very numb - not sure if there’s anything that can help this.
And fatigue, I have had bloods taken and my b12 etc is all okay. Also noticing that I am mixing my words more often when I speak. I have also noticed some numbness on the left side of my private bits.
I am just fed up and don’t know where to go from here
Just wondering if anyone has gone through anything similar and what can I expect? Just hoping the neuro appt is soon as nothing seems to be improving.
Hi
Fellow newbie here. I can’t advise on symptoms but I think my neuro appt came about 8 weeks after my MRI. Around the same time I was contacted by the MS nurses. They’re very supportive. Hopefully you’ll have the same resources in your area. (I’m in Leeds). You will probably have lots of questions for the neurologist. I would suggest writing them down before you go. I didn’t and that was a mistake. I had to have a second MRI and a lumbar puncture before I got a firm diagnosis. Anyway sorry I can’t be more helpful but good luck going forward.
Sorry to see that you’re struggling, hopefully you’ll see your neuro soon. Numbness and tingling sound really trivial don’t they, but it’s amazing how much they can drive you mad. Hopefully your neuro has got access to a multidisciplinary team who are specialists in ms, they are Worth their weight in gold. I think your first priority could be understanding what causes your symptoms, and whether there’s anything that could be done to alleviate them whether that’s medicinal intervention or something like physiotherapy. At least that will give you something to focus on in the here and now have some progress to measure. Your neuro, if it is ms that you’re diagnosed with, should then want to look at what they call disease modifying therapy which is basically drugs to control the progress of MS. It’s probably a good idea to start thinking back about weird tingling or numbness or pain or dodgy limbs to see if there’s some kind of timeline that you could fudge together. You might draw a blank but if you’ve got Notes they’ll be handy to refer to when you see the neurologist. Start thinking of questions you might have and make a note of them, I’ve lost count how many times I’ve got home from an appointment and realised that I forgot to ask any of my questions. It also means that once you’ve written it down you don’t need to keep reminding yourself about it and driving yourself mad.
Treatments have come on massively in the last 10 years, so there’s plenty of hope. This place is great if you need to have a meltdown, it’s a really weird condition to have and trying to explain it to other people can be difficult so don’t be afraid to vent on here, it’s better out than in. Take care of yourself
Yep I know the feeling. The below is my logical opinion, not medical advice.
If its RRMS then symptoms from the legacy damage should ease over time to a residual amount - I barely feel the numbness and tingling I had 10 years ago any more.
Keep active and exercise upto but not through fatigue.
I find it helps to accept that things for me, sportswise, wont be the same again so I set the bar lower and expect less of myself to get my achievements.
Ametripterline is V good for pain, and other sensations, I take 20mg.
My B12 tested within the limits so not eligible for injection but I find taking 1000mcg sublingual tablet per day helps allot.
What you can expect, if you have RRMS, is a few months like you are now followed by a gradual decrease in symptoms till they reach a residual level. They will then flare up from time to time (bugs, colds, heatwaves etc). New lesions/demilination, bringing new symptoms, will depend how quickly your Neurologyst puts you on a drug so I would push for one. You may be lucky and have no further relapses.
Take some Omega 3, for life.
