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Newly diagnosed

I got told 9 weeks ago by neuro that I have benign ms I first had my first episode 7 years ago when I lost my eye sight but was not diagnosed, until now when I had double vision again 5 months ago had brain MRI done and was given the result. Went to visit my Gp 4 weeks ago as my right leg gave way under me at work and now my leg gets pain in thigh and is kind of pins and needles from the knee to the foot sorry for the way I explain this I also am kind of feeling like my head is fussy and feels like I’m slightly off balance. My doc has referred me back to neuro so I’m waiting again what I’m asking does it sound like my ms is benign or not or am I going crazy if anyone can give me advice I would be so grateful.

Hi, sorry about your diagnosis. It doesnt sound benign to me, I thought you could only be classed as benign if you are symptom free for 10 years? It sounds like you are having a relapse, has your doctor recorded this? Maybe your neuro will re think his diagnosis when he looks at your obvious relapses. Take care.

Yes my doctor recorded it in the letter to neuro when I seen him I did query the benign with my doctor as it has been less then ten years and he just tells me that it is good news I’m so confused right now

Also I don’t actually have a neuro as the first one I seen was retiring that day so hopefully the new one I see will be ok

Hi, that is very confusing because it is inaccurate by everything I’ve read. MS can only be classed as “benign” after 10 years or so with no further symptoms, e.g. http://www.mssociety.org.uk/what-is-ms/types-of-ms/benign-ms and http://multiple-sclerosis-research.blogspot.co.uk/2011/11/what-is-benign-ms.html. There is also a standard list of good and bad prognostic factors in http://multiple-sclerosis-research.blogspot.co.uk/2013/06/benign-ms-misinterpretation-or.html. So that list of factors supports that you not having many relapses in the 7 years is a good sign. But it is now active. So benign?

I lost sight in my right eye (Optic Neuritis [ON]) in early 2010 and was dx in late 2012 after left sided “weakness” and balance trouble. Actually the diagnostic sign was nystagmus at the extremes of eye movement but that had not been noticed. The neuro (general neuro but with a special interest in DXing MS) said it was almost benign especially as he thought I’d had it years longer though I hadn’t complained of anything. After putting an MS nurse in touch with me he pretty much discharged me.

I had another relapse this year and the MS nurse got me seen by an MS specialist neuro (ie a neuro who treats MS and is authorised to prescribe DMDs).

I’d try to get referred to an MS specialist.

Am now waiting to see new neuro my dr has told me he has requested the ms clinic to see me I actually think I’m going mad as the bottom half of my leg and foot is numb now and I feel like my ankle is going to give way on me it’s one strange feeling

I feel like my knees wobble, go fuzzy and are just gonna give out and I’m on tablets for my vertigo.

You’re not going crazy and I wish you the best of luck at the neuro.

Tsuki xx