Just been told I have benign ms had first attack 7 years ago then 2 months ago with double vision can anyone give advice as the consultant has wrote to me with this and wished me all the luck in the future and said nothing else I’m in limbo.
I was diagnosed 12 years ago - neuro didn’t tell me anything other than I had MS. I’ve seen people here who know about where their lesions etc are - I have no idea. He sent me away and just told me that if my symptoms got worse to go see my doctor. That was it. I’ve not had any scans since, no queries from doctor, no appointments for MS nurses and no drugs at all. Now on the plus since I have only had 3 relapses in those 12 years and even then they are not severe enough to go to doctor - I just get on with it myself.
I have heard benign MS referred to as just RRMS but a long time between relapses. If you feel you need more info then go back to your GP and ask him/her for help. But don’t just leave it - keep at them til you are happy.
Take care hun
JBK x
I was given the same diagnosis by my neurologist. I was at least referred to an MS nurse who I now see yearly. I found my GP to be the best person to see. She helped me to find a pain reliever for my legs and feet. She also didn’t put all my ailments down to MS. For instance she sent me to a physio to help with back pain which could or could not have been an MS thing. The MS nurse has also referred me to a physio to help with balance and a continence advisor because I felt my bladder was a bit over active. She was great and although I don’t need to see her regularly she is at the end of a phone now. Try your local MS branch and they will help you to get in touch with an MS nurse if there is one in your area. I agree that you should get more info. There are too many people who are diagnosed and then just left like you. Good luck and take care x
Thank you for your replies I have been to see my doctor who is referring me to the clinic as I have also had numbness and weakness in my fingers for years and tend to drop things I was always told it was down to my job he told me this might not be down to work but the ms so at least he is doing something and referring me now.
my neuro said that benign ms is when you have one relapse and they dont diagnose you as ms untill you have a second relapse. they are hoping it is a one off thing untill a second one appears.
“Benign MS” is a controversial diagnosis, as technically, it can only be made retrospectively, after ten years or more without problems.
As it’s impossible to predict at the outset how anybody’s MS will go, it’s not a diagnosis that can be made with any confidence at the beginning. And even seven years between episodes still doesn’t satisfy the strict definition of “benign”.
Although there is no such official diagnosis, it seems quite fashionable, at the moment, to tell patients this. I suppose consultants think it’s quite positive and reassuring. But the downside is that patients told it’s “benign” often feel they don’t have “proper” MS, and that they must be whining or making a fuss if they don’t feel well.
ALL MS is real and unpredictable, and it’s only “benign” until the first time it isn’t. A “benign” label doesn’t mean you ought to be feeling fine, and that you’re not entitled to any help or follow-up. The GP has done the right thing in referring you.
Tina
x
Oh, PS (for Kernowgirl), one relapse by itself is usually called Clinically Isolated Syndrome (CIS), not “benign MS”. If it never happens again, it’s not MS - not even the “benign” kind. So touch wood it was just a one-off, and won’t ever become MS.
Tina
x
Hi, I had first signs of numbness in fingers, had tests nothing resolved.
10 years later three symptoms of ms within 6 months that came then went. Had a MRI and lumbar puncture - diagnosed with benign MS as no episodes for 10 years. I did feel as though I didn’t have MS but was always thinking about it, taking fish oil, avoiding bugs etc. Gave me time to enjoy life with my partner and daughter.
It’s only in the last four years (26 years since first symptoms) I’ve had problems walking - spasms spastcitity so MS changed to SPMS.
Benign MS is often just lurking but not showing itself. Enjoy your life, do everything you want to and hope ypur MS behaves itself!!
Jen x