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Strange MS - new symptoms but no relapse and no new lesions

PostPosted: Wed May 13, 2020 4:50 pm
by xeon550
I have MS for 5 years now, and no new lesions since 3 years. This month I had my first new symptoms after 3 years and I was 99,99% sure I have new lesions, so I made an MRI. Surprisingly, there are no new lesion and the result is same as before.
My questions is: CAN YOU GET NEW SYMPTOMS WITHOUT A MS RELAPSE AND NEW LESIONS?

Re: Strange MS - new symptoms but no relapse and no new lesi

PostPosted: Wed May 13, 2020 8:14 pm
by Camaban
Hi Xeon,

As far as I am aware, everyone can feel certain symptoms which can mimic MS symptoms, but not be related to ms in any way. I have read many accounts from people who have sworn they have MS after experiencing pins & needles/numbness along with brain fog or other cognitive issues, but have shown no lesions or evidence of MS on multiple MRI scans - so I think the answer is 'Yes' you can experience symptoms without lesions.

If you don't mind me asking, what symptoms have you recently been having?

I was diagnosed around 9 months ago after my first known major relapse, and for the last 2-3 months I have had a fading feeling of weakness in the lower back/upper leg, which sometimes feels like the onset of a relapse, but never progresses. I have reasoned that this is down to maybe a little bit of wastage in that area, or an echo from my relapse - but I'm really unsure, although I am confident that it is not the onset of a relapse.

Re: Strange MS - new symptoms but no relapse and no new lesi

PostPosted: Thu May 14, 2020 5:28 am
by xeon550
Thanks for answering!
Note that I already have MS.

I have only senzorial symptoms at the moment. My new symptoms are: small "vibrations" on the left side of the neck and left leg (they come and go), and needle in the left foot. I know it is not big, but I want to know if this is a sign of MS disease activity or not.

Other people please answer if you know.

Re: Strange MS - new symptoms but no relapse and no new lesi

PostPosted: Fri Jul 17, 2020 2:59 pm
by Jul
Hi there,

I just saw this post or I would have replied sooner. I have had MS for decades. I have been on the program for 2 years. I had a relapse last September with new areas of numbness and new stiffness particularly in my right leg. I had an MRI this past February and no new lesions were detected. I think old lesions can maybe get worse or old areas can flare up again. I don’t really know except that this program works. I largely recovered from last September but not fully...yet. It happened again this spring and I am less anxious this time around.

As for the vibration feelings,,,I can only speak from experience as my primary symptoms were sensory for the first 15 years. Just about every part of me has had sensory symptoms at some point. So as to your question, “Is it a sign of disease activity?” It is an MS symptom but I see if as a sign of healing activity.

My experience is that the vibrations are just evidence that the signal is trying to go through and is having some difficulty. It is definitely a better clinical sign than the numbness which indicates that the signals are not going through much at all. I live with vibrations and try to welcome them (I know that is almost impossible, but I try) and thank my body when I feel them for trying so hard to get the signals through. It is like a radio station that is not quite clear but it is still working. It is trying.

Try not to stress. Your body is on your side, doing everything it can to heal. Have hope and stay on the program. Maybe challenge yourself to do more with the program if you can. Try to stay calm and remember, healing takes time.

I hope this helps,
Jul

Re: Strange MS - new symptoms but no relapse and no new lesi

PostPosted: Thu Aug 19, 2021 10:08 am
by Matthew
We were talking about this during a meet-up of an OMS Circle. Disease progression does not always manifest as new lesions on an MRI and conversely, new lesions on an MRI do not always manifest themselves as new symptoms.

So quite why neurologists use the presence of new lesions on an MRI as indicative of disease progression and thus drug choice, I know not.

IMHO our biggest enemy is stress and the emergence of new symptoms, even temporary, has the power to cause us damage. Your friend here is meditation and mindfulness, staying in the moment with the breath. I speak from experience here, with recent emotional trauma causing a significant increase in my symptom level; when I practice mindfulness and meditation in these times (which is a difficult challenge) I find the symptom level decreases.

The same applies to new lesions show up on an MRI in those people who have in their experience recovered. The Profession wrote a blog post on this subject, which sadly not available on the "new" website but his reply to the OMSer who posed the question was quoted here:
viewtopic.php?f=10&t=4930#p31311