I’ve had MS almost 16 years (and I’m only 33) and have coped great with it up to now. Relapses have been few and far between consisting mainly of nystagmus and L’hermittes sign.
Before xmas 2015 i developed numbness to my legs and, ahem, ‘saddle’ region. This cleared up after a course or oral steroids (about 4 weeks in all) however reappeared in legs around may this year. Neuro reckons its not a relapse but ongoing symptoms.
Last week or so I’ve had blurry vision in my left eye - seems to get loads worse when im busy or active. Called nurse yesterday but havent heard back yet and haven’t sought any other help yet.
I saw my GP (turned out to be a locum) as i’ve been having increasing feelings of anxiety relating to my MS and what’s coming next - my husband and I have four young children together (10, 7, 4 and 19 months). I’ve never felt so out of control and always assumed (probably stupidly) that my MS was a rather benign form. I was basically told to get used to it.
Fatigue is also becoming a problem this year - I’ve got a to do list as long as my arm and I can never seem to get anywhere near through it.
Sorry for the rant - any advice very welcome, particularly re. the blurry vision, I’m not really sure who to see about that.
It sounds like it could be Optic Neuritis. I had my first experience diagnosed when I went to see the eye specialist in hospital. This was pre-diagnosis. Post-diagnosis I didn’t see anyone, just spoke to my MS Nurse. It’s a horrid, painful thing.
I’d chasing your Nurse and explain your anxiety as well. It can be a scary illness can’t it!
I don’t think the GP will be much use. He ain’t stupid, its just that MS is rather specialised. He can refer you to a specialist, even a different one to your current consultant.
Instead talk to your MS nurse or get in touch with the nearest MS Therapy centre. Also find out if there is a neurological rehabilitation centre close to you, they can be quite helpful. Googel ‘MS Therapy Cenrte’ or ‘neurological rehabilitation’. An obvious point of contact is your consultant but does not sound terribly helpful.
My advice is pretty much the same as the other guys…
Many years ago, I was suffering from double vision so went to see my optician, who referred me to the eye clinic at the hospital where tests confirmed I had optic neuritis. This was before my MS was diagnosed, and I have since learned that ON is quite a common symptom of MS.
The referral to the eye clinic took several weeks to come through, so I would suggest that instead of seeing an optician you talk to your specialist nurse who may be able to get you seen quicker.
Also, discuss your other symptoms with the nurse; GPs are well meaning, but they’re not experts on MS.
my experience began when I was told by my GP that I had conjunctivitis which he gave me drops for. This went on for weeks until he referred me to Moorfields Eye hospital. They were brilliant, diagnosed me with Uveitis gave me drops and it cleared. Now 40 years on my eyes are so blurred when I had my appt’ at Moorfields they gave me a MRI of my head and eyes, they said it is MS.
my thoughts are skip the doctors, skip the nurse and go to A/E eye clinic as I personally have discovered that neither the doc’s or nurse know very little about eye problems.
i hope your eyes are sorted out quickly, Best of luck.
You’ve not mentioned whether you are relapsing remitting or SP but optic neuritis sounds like a relapse to me. I should think getting some advice from an MS nurse / neurology nurse / neurologist would be a good idea.
Maybe another course of steroids would help. But it may be that it’s a bit too close to your last course.
It sounds like you could do with a review of your MS, your symptoms and / or drug therapies. You haven’t said whether you are on a DMD but if you are starting to have more relapses, it might be time to start one.
If you do have an MS nurse, try to make an appointment with her / him to talk through where you are right now. And if you don’t have one, find out if there is an MS specialist nurse in your area and make an appointment to see her / him.
