Wondering if anyone can help. I was diagnosed in 2010, visual problems and then what I thought was carpal tunnel. I have rrms. I have the tingling hand every now and then and had a large optic relapse a year ago where I couldn’t see ok of one eye at all but steroids sorted me out. I now have quite bad tingling in my hand again. Everywhere I look it says treatment early is encouraged yet I’m on year 8 diagnoses and not been offered anything. Don’t get me wrong I’m still very lucky with it… but I’m wondering if I should be preventing to some extent?? Any one has a similar situation or advise? No one knows I have it but my husband so just wanted to ask someone. Thank You.
hi anonymous
are you saying that you haven’t been offered a DMD? (disease modifying drug).
eight years is a long time to be left without treatment.
get in touch with the neuro who diagnosed you or phone the hospital where you were diagnosed.
it sounds like you have slid off the radar.
you’ll have to be your own advocate.
get on that phone now!!
The tingling sensation sounds like “neuropathic pain”.
There are several medications prescribed for this symptom. Ask your neurologist when you speak to him or her.
Do you have a MS specialist nurse you could talk to?
Regards,
Anthony
I suspect the problem is that in order to be eligible for DMDs, you should have had 2 or more relapses in the previous 2 years. So if you’ve had less than that, you wouldn’t be offered any.
If however, you’re finding that you are having more relapses now, you could push for a DMD. Clearly, the number of available DMDs has massively increased in the last few years, so if for example, you wanted to give Tecfidera a go, you probably could. (It wasn’t available when you were diagnosed.)
Sue
I may be wrong here but I get the impression that DMD’s are not being prescribed as readily now as they were a couple of years ago???
Which is bizarre when you think about the number of DMDs available today.
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Hi. That’s correct I’ve not been offered anything. I went last year with a fair bad eye issue. Think I will ring again as my arm and hand have been going off for a couple of days now probably worth trying to get looked at and reviewed again.
I see them yearly. I will be booking something in in September so will bring this up thank you.
Thank you Sue. I’d not heard of that. I will bring it up when I go.
Hello
Some of the neuros who believe more in proactive treatment are prepared to take sub-clinical activity (ie new MRI lesions) as a sign of activity to help tick the “two attacks in two years” box required for “active” RRMS and the drugs that NICE/ NHS allow for that (this is how I qualified for Lemtrada). Might be worth pushing for a new MRI too - as only a portion of MS activity seems to manifest in symptoms.
Even without “active” RRMS, you should be eligible for the same drugs as are available to those diagnosed CIS? (Interferons etc).
good luck!
K
Thank you they did a new MRI last year and he said the lesions have increased so there is new activity. But didn’t mention anything else. Thank you. Feel more armed with information