Last reply 1 month ago
Too many lesions to count

I just got the results of my MRI that I had done last week, and the number of lesions was “too numerous to count” (well over 50). I am not on any medication right now just because I don’t really have any obvious symptoms. For me, my MS isn’t even something that I notice on a regular basis – I had optic neuritis 2010 and no relapses since. Plus, all of the side effects for the medications really make me nervous about taking anything. My neurologist really wants me to start taking meds and I’m leaning towards tecfidera (any thoughts on this are appreciated). Before he prescribes anything to me though, he wants me to see a rheumatologist because I have really high ANA levels which could mean that I have another autoimmune disease in addition to the MS. Just really frustrated with how the MS is progressing and needed to vent. I was also wondering if anyone else has high ANA levels so that I get an idea of what I should be expecting to hear from the rheumatologist. Thanks!

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nutshell88
1 month ago

I was daignosed in 2005 i got my second relapse 2010 and traveled to study in uk
I get relapses every 3-1 year
They told me in uk i should be on treatment 2014 developed atrophy
Im still 100% fine
But they told me i must go on treatment last week
Oh well i did


bas76
1 month ago

@starchild90 tough one, some people choose not to go on any medication and may be fine but could get worse. It is a gamble and the experts don’t know the course of the disease even if they looked at all your 50+ lesions and where they are located. In my opinion it seems to be down to what has been damaged and not necessarily how many lessions. You probably could get someone who only has a few but could be severely affected as the damage may be more severe or located where it may cause more symptoms.

When I was diagnosed 2 years ago I had around 26 lessions mainly on the brain and some on upper spine. As I had two occorances before my diagnosis (lost movement and feeling to left of my face, followed by double vision 6 weeks later) I qualified for DMT. Opted for Avonex injection which I self administered once a week. It was awful for at least 4 months my weekends were wiped out as I objected on a Friday and had flu like symptoms for the whole weekend. Recently changed meds after having a relapse after getting the flu. This is a tablet called cladribine which you take for only 2 weeks and nothing for 1 year. Fingers crossed this works. I glad to hear you are feeling well but perhaps it is worth looking into what meds they are proposing and why and asking what the side effects are. My recent relapse has made me feel it is better to be on something than nothing as if something happened which really had an impact on my quality of life I would forever be thinking what if. Good luck and keep us updated.


sam10
1 month ago

Your leisions look like age, just a number. 😀 Take it easy.


stumbler
1 month ago

@starchild90 , you’re so young to be dealing with all of this.

The brain, lesions and the cause of lesions is a complex subject. Diagnosis is therefore a complicated process of eliminating the probables and investigating the possibles.

MRI scans are a window into the brain, but the window gives a far from clear view, so other factors are considered, e.g. blood tests, lumber puncture and medical history.

The fact that a view from a rheumatologist has now been requested suggests that the investigations are not yet complete.

We have to put our trust in the medical experts, so persevere down this road.

We don’t suggest that we are amateur neurologists and you shouldn’t try either. If you are symptom-free, get on with enjoying life. Live healthily, eat healthily and try not to worry about theses complicated questions. Stress can be a major antagonist of a lot of these type of conditions………..


grandma
1 month ago

@starchild, you don’t say how old you are so it’s difficult to comment but some info, I’m 62, dxd 26 years ago, was on Avonex for 23 years, got changed to Tecfidera in Jan this year, haven’t a huge no of lesions but obviously the few are very active and the Tec is supposed to slow the activity down. It’s your decision but get all the info you can, but all dmt’s are supposed to slow progression.😍


starchild90
1 month ago

Thanks everyone for your responses!
@nutshell88 You’re right, I think the fact that I feel fine right now is what has been holding me back from seeking treatment. What were the biggest factors you considered in choosing your DMT?

@bas76 Yeah, your flu like symptoms are pretty much what I want to avoid but I know at a certain point there’s no getting around it. You are right though, I do want to start taking something because I don’t want to look back and wish that I had. Good luck with your cladribine, hoping the best for you!

@sam10 Here’s hoping they stay that way!

@stumbler Thanks! I am trying to be as healthy as I can and exercise regularly. After a look at my MRI, blood tests and lumbar puncture results my past two neurologist have been confident in my diagnosis. As far as I know any diagnosis from a rheumatologist would be in conjunction with the MS diagnosis and could potentially effect my treatment options.

@grandma I’m 22 years old, was 13 when I first got my optic neuritis and 19 when I was officially diagnosed. I am definitely trying to be as informed as possible! I recently moved so I got a new neuro this year, and I feel like they really want to get the whole picture of everything thats going on; which means they are taking a bit of time before they give a recommendation for any DMT. What made you stop the Avonex, was it just not working well enough?


nutshell88
1 month ago

Well, they wanted me to have interfereon here in Saudi
When I was in thr uk they said your state iss too progressed never unterferron

My opinion was agreeing with uk
So they chose gelinya and honestly i feared tecfidera side effects
I know all of them is dangerous but i feel gelinya is like nothing so far didnt show any side effects


grandma
1 month ago

@ starchild, the Avonex just stopped working but can’t complain after 23 years, it was the first and probably now the least effective of the dmt’s but very safe and if you have less active ms and are young it’s probably still useful. I’m on Tecfidera now and it’s such a joy taking 2 tablets a day instead of sticking a big needle in myself once a week! Hope all goes well for you.😍


starchild90
1 month ago

@nutshell88 @ grandma I’m glad both of your DMTs are working for you and I hope they continue to work well! Thank you both for sharing your experiences!


lightning87
1 month ago

As the others have said, the number of lesions doesn’t necessarily mean anything. It’s where they hit.

I think by your username you are 3 years younger than me. If I were you, and it is totally your choice, I’d start medication. It may prevent a new lesion hitting somewhere important.

For me, medication was no issue. I wanted to have meds but know this isn’t everyone’s preferred option.

I’ve been on Tecfidera for nearly a month now. Luckily no side effects at all, not even flushing even when I went up to the full dose. I know this isn’t the case for everyone though.

I would research all your options and chat about them with your MS nurse.

All the best hun. You have 50+ bright ideas going on in your head that’s all 😉

Xx


colinbannon
1 month ago

The most useful perspective to have with MS is not only how you feel right now, but how you are going to feel in a year, decade and onwards. What sort of grandparent are you going to be? MS is a process rather than an event and so it is useful to do everything you can as early as you can in the course of the illness.

The best evidence based lifestyle is well described in “Overcoming MS”, a book free from the website of the charity OMS, and the best source on the science of MS is on the Bart’s blog.

Treatment decisions are difficult; I was diagnosed aged 57 and have based my decision not to have treatment on having no relapses that I know of, three consecutive MRI’s showing no change, and neuro-filament testing within the normal range. However as time goes by I realise I do have cognitive and mood issues which have built up over the years.

If I were younger, or had any evidence of active disease I would add the best treatment to my brain healthy lifestyle.

Not having treatment is a big decision and not at all based on how we feel at the moment. That is why its so difficult. Best wishes, it’s not easy, but we make decisions for tomorrow today.


peterfrancis
1 month ago

I remember being told something similar, in terms of the amount of Lesions present after my first MRI. The words were, “Well, for someone your age this is the most I’ve ever seen.”
No numbers were given and I was elsewhere at that point or at least my mind was, so did not think to ask how many.

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