Benign MS??

[Suzie9]

A friend of mines Mum was diagnosed with MS approximately 20 years ago. Relapsing remitting I believe and I don't know where her lesions were located or how many but she definitely had some. She is now over 60 and apart from occasional numbness when stressed has not had another episode or deteriorated. She has also never been on any medication for her MS. Is this Benign MS? or as she has not seen a neuro in years could she have been misdiagnosed?

[jed9999]

Slight MS could very well be Benign MS. Here's my story of Benign MS --for 36 years, my old neuro would say! Hello, I was DX'd with MS (probable) back in 1973 when I was 24. I had had some minor SX's like one bout of vertigo, several light episodes of double vision, and some numbness, so when I got optic neuritis, it was rather a "no-brainer" haha. I continued on with sensory symptoms (had three kids with increased symtpoms post partum) and had my first MRI in 1988 when my current nero gave it to me to prove I didn't have MS--I knew I did, but he couldn't see much of anything! I delighted in seeing egg on his face!

Despite daily symptoms ranging from leg weakness, slurred speech (in cold),  heat sensitivity big time, pain of many kinds and truly zillions of listed MS problems, I was kept Benign because my neuro never saw me very bad off (like after a shopping trip) and I never managed to convince her I wasn't just "ducky" even when I had bowel incontinence as my disease advanced. I've now had MS 36 years and just changed neuros. I have had great difficulty getting rid of bronchitis this whole winter and I had a major exacerbation in December which I believe actually changed me (if I ever was still Benign) to secondary progressive. I have been on oral steroids about 7 weeks total this winter and still have the bronchitis. Infection sure does a job on MS!

So yes, it is quite possible to have Benign MS even though I saw the whole 36 years how I *was* very gradually getting worse---by anyone's estimation. Thirty years ago my kids knew mommy's legs got weak easily---and now I don't even try to walk very far at all. But some people would still say I was benign because I can still walk--albeit using my husband's arm instead of a cane. All the days I have spent with numbness, aching and downright pain, I sure would never call it Benign--except maybe technically since I no longer have clearcut R/R.

It's interesting most guides now list just four types of MS---and totally leave off the Benign. Sure, there are a few people who have one episode and never another---which I do believe is possible. Lucky lucky them. Most of us don't follow that course. there is tremendous variance! We all do the best we can with what we're handed, and if we manage to stay upbeat, we're bound to do better! We falter when we let down and give up or begin to think we're the only ones in the world with problems. EVERYONE has challenges in Life--this is one of ours. We can help each other cope! Cheers! Jane


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[sllowe]

Hey Suze,

I hate this word benign MS, but it is wonderful that she's not progressed.  Do you know if she's followed by a Dr and gets imaging from time-to-time?

Seems she's not very symptomatic no matter where the lesions are, and that is a good thing.

There should have been clear evidence 20yrs ago that she had MS, as dictated by the criteria at the time. That criteria has changed over the years and it is captured in our HPs.

Think it would be good to peek at those from time-to-time, especially since your in a situation where they are keeping an eye on yours, and not suggesting treating at this time. You have the lesions in your spine too, if I'm not mistaken right?

ttys,
Shell

[doni54]

Hi Suzie,

I really don't know how to answer your question.  I have heard other members saying that their neuros have labeled them with benign MS, but everything I've learned here and read on other research, says that MS continues to do damage even if the symptoms aren't showing it.

I couldn't say if she was misdx or not.  Maybe Quix will chime in here and give us her opinion on this.

doni