Last reply 1 month ago
Benign MS

I was just diagnosed with benign MS not quite sure about it as of yet, all I know is my symptoms with Tingling in the scalp, right arm, pain in those areas also plus right leg, are very real, but I guess will know more once I get to see the MS specialist

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vixen
1 month ago

Hi @bobbij, welcome to Shift, which is all about supporting newly-diagnosed people. Did you have an MRI and lumbar puncture? I think most of us with MS would query the ‘benign’ label; this is a bit of a contradiction! While waiting for another appointment, take care of yourself and rest as much as possible. If you do research, don’t randomly Google, and always stick to legitimate sites like this, or MS Society/Trust. Or ask any questions here, we try to be friendly and helpful! 🙂


henrietta
1 month ago

@bobbij – After tests earlier this year I was told by the general neuro that it was ‘probably benign MS, not to worry’ and was referred to the MS clinic – when the MS specialist called me to confirm that I had RRMS on July 24th I asked if it was benign and he said most people find the term patronising. He didn’t confirm or deny whether it was benign. To be honest I was like hey, benign sounded good to me! But seriously I think mostly – from what I’ve read – that the vast majority of MS specialists no longer use that term. Firstly it could sound patronising but also it maybe gives the wrong impression as the school of thought now is that even if your MS isn’t affecting you massively it is potentially smouldering away in the background, without symptoms. **If I am incorrect in this understanding, I hope others here will put me right as I don’t want to give bad advice – it is just what I have understood since dx**

I’d recommend watching Dr Aaron Boster on You Tube too – he has one for newly diagnosed and this one is him on ‘Does Benign MS exist:

Hope that helps, and that your MS stays as benign as possible…


henrietta
1 month ago

@bobbij

I have no idea why the wrong link uploaded above, as I did have the right one – and I can’t edit my post! Anyway he does do one on ‘Does Benign MS Exist?’ so you could check it out!


watsoncraig
1 month ago

Hi @bobbij welcome to Shift where we all try and help out as well as not being serious all the time.


bobbij
1 month ago

[email protected] First to be up front my name is accually Cathy, Bobbi j is what my sister has called me all my life, I go by that when I get on a site till I’m comfortable where I am,
Anyhow yes I think the term benign is used loosely, hey it’s a form of MS either way don’t treat it differently because our systems may not be as strong as others its still there.ues I will watch the tube video thanks


bobbij
1 month ago

Hi @watoncraig, first my name is really Cathy my sister’s calls me that, but I go by it in a new site till cimfortable here and then use my name, but yes life is to short to be serious all the time, just like to keep informed thanks


stumbler
1 month ago

@bobbij , Here’s the correct video, referenced above :-

My view of Benign MS is like a Doctor telling a young lady that she is a little bit pregnant!

It’s binary! It is or it isn’t!


mhworden
1 month ago

Hi! Yes, it’s a thing! That’s what I have. I’d say Smouldering (slow burn) is a more accurate term, indicative of little or micro accrued changes/no obvious relapse over an extended period of time. For me, almost 14 years on Copaxone plus who knows how many years I had it before symptoms were sufficient to seek a diagnosis. I’m a bit surprised they’d use the term at first diagnosis though, when they don’t have a benchmark position to assess progression from? I’m a big proponent for DMTs. Hope your disease path is glacially slow!

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