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Real members of MyMSTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Question About Being Diagnosed...

Question About Being Diagnosed...

I asked my neurologist how many lesions did I have? His answer: there was too many to count so I just stopped Counting. What kind of answer is that?
I've had 2 MRI's one of my head and one of the back of my head and neck. A women I used to work with also haves MS and she asked me how many lesions I had, I told her I don't know the doctor never told me. She said I had a right to know that I should ask hihimShe told me she knew she'd have 13.

posted March 1, 2017
A MyMSTeam Member

My Neuro says it doesn't matter how many lesions you have, it matters only which lesions are active which they detect by doing an mri

posted March 1, 2017
A MyMSTeam Member

Geesh, I'm sorry your doc said it like that-so vague. It'd be nice for you to have a rough idea at least. My former neuro said I have less than 10 but he never gave me an exact number. Some lesions are harder to see because they are small specks-hiding in various layers of the brain; Now my 2 bigger ones are much more visible in front part of my brain and show up every time I have a brain MRI. I've heard of patients saying they have 30 or 40 lesions and their challenges are similar to mine-RRMS.
I was told from neuro that the degree of symptoms all depends on lesion size and location. Ex: The 2 bigger lesions I have up front (I believe cause my worst symptoms). It's very weird how this disease works, but thankfully today's treatments keep lesion size in control. Just grateful we live in this time that we have something to help us! I hope this helps you a little.

posted March 1, 2017 (edited)
A MyMSTeam Member

That is kind of doctor does not need to be dealing with patients with diseases of this type. I saw one like him before he was so mean that it was the worst thing I could have Morris follow up with me. I told his nurse I wanted nothing to do with him. He now only deals with sleep disorders. LOL

posted March 7, 2017
A MyMSTeam Member

Yeah mine is >30 they stop counting after a bit. Here is the thing, the total number of lesions doesnt determine the clinical severity. Also keep in mind that most MRI's dont even image the entire brain but takes representative samples every 5 mm or so depending on technique. Many lesions are smaller than that so in reality the number probably isnt precise anyway. Most brain lesions are actually asymptotic in that they arent in areas likely to produce any specific symptoms. The lesions that cause they worst symptoms are brain stem and spine. Gray matter lesions are generally too small to be seen routinely on standard MRI although we know they occur. So at the end of the day, the number of lesions really doesnt matter as much as you might think and the count particularly the higher you go probably isnt even correct.

posted March 2, 2017
A MyMSTeam Member

TinaMarie:,As you can see from those answering your question different people with MS have very different numbers & sizes of brain leasions. From what I've read there is little correlation between number or size on physical disability. So not to discount MRI's but use of disease modifing treatments (DMT) is very important regardless of number & size of MRI lessons. @Timbofrog

posted March 1, 2017

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