Last reply 1 year ago
No new lesions but aggressive symptoms

Hello. Some of you know me, many more of you don’t. Generally my posts tend to be long, but I’ll try and make this one short.

I had an MRI done recently as I have an appointment with my (new) neurologist in just over 6 weeks. I got a call from my MS nurse yesterday and she let me know that it’s good news and the MRI doesn’t show any new lesions. Of course, it is for the neurologist to discuss this with me fully and explain most of what I’m about to ask here, but it’s nice to get community input sometimes.

What confuses me most about being told that my MRI shows no new lesions is that I am getting steadily worse. This isn’t something new, either, as my condition has been stagnant or getting worse for the last 16-18 months (mostly the latter) with absolutely zero periods of remission (ironically I have RRMS). My last (two?) MRI scan(s) have shown the same lack of new lesions.

I asked my MS nurse how it can be possible for my brain not to show any new lesions or any general activity (although I cannot be certain of what she said about my old lesion, as I can’t remember) yet my symptoms be such that I can’t walk, talk, hear, see etc etc normally. I also asked if it is possible for everything that I’m experiencing to all be down to a single old lesion and if it was all residual symptoms from that. I was told that it could be possible, but they’re not sure.

I mean, having MS is confusing enough, but when your MS can’t even decide if your MS is MS, things start to get annoying. I don’t understand how such an aggressive onslaught of worsening symptoms can happen without new activity in the brain, as I always assumed the two went hand in hand.

If anyone else has had any similar experiences, I’d love to hear them, but perhaps more importantly I’d be curious to know what kind of questions you guys think I should pose to my neurologist. I have a few in mind, for example “what part of my already failing body thought it would be funny to make my symptoms worse and not leave any evidence?” and “what part of my brain was my previous lesion on and what things does/did that affect. Is this still ongoing?”. I’d really appreciate some input as I feel meetings with my old neurologist (lovely lady, but unfortunately she’s left) was a lot of playing “touch my finger, touch your nose” and generally aimless conversation of which I would recall 5% once out of the office.

Also changes in mood. What. The. Hell. One day I’m ready to take on the world and the very next I’d rather be 6 feet under. I’m not suicidal by any means (I would like to stress this), it just feels like sometimes I’d like to take a permanent nap.

Guess I don’t know how to keep things short, after all. Ha!

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1 year ago

this is not a comfortable topic. I’m so sorry you are having such a rough time. My MS appears to progress no matter what drug I am given. I am trying a last ditch effort with HSCT. I only mention these things because I want you to know I understand your fears to some degree.
My main question would be. Am I still considered RRMS? Or have I crossed over to another type of MS?
What are my treatment options? Cladribine? Lemtrada? Ocrevus? HSCT?

1 year ago

@aabreu – Thanks for your reply. Yes, I definitely plan to ask what my treatments are and I also want to know why treatment wasn’t considered 4 years ago when it was suspected I had MS. Asking about whether or not I still have RRMS is interesting as it was something that crossed my mind a while back. I appreciate your input, and I sincerely hope things get better for you.

1 year ago

@eigenhater , you may want to read the first few pages of this publication :-

It describes the various types and sub-types of MS.

Mood swings are to be expected with an unpredictable condition. Some days we’re up to the challenge. Other days we just want normal again. 😉

1 year ago

Hi @eigenhater, I understand exactly what you are saying. Last summer, I had new symptoms appear in a different area so when I had an MRI in Oct I expected it to show new leasions. Nothing. Since then, symptoms have continued to shift and change constantly. I have kind of given up trying to understand what RRMS is and don’t even bother to call my MS nurse any more. I focus on diet and exercise and am in a good place emotionally and mentally. But this MS thing, I really don’t get it…… I can’t find anything on available publications which reflects what I experience every day, but hey ho, life is good apart from the mystery of MS x

1 year ago

Very interested in first part of your comment. How do you get to see your Neurologist? I haven’t seen mine for 7 years. M.S nurses are brilliant, and probably know more than him anyway, and am well aware that my ‘face’ doesn’t fit at my local hospital, but even so does anyone else have to wait as long?

1 year ago

@grandma, Neuros are difficult people to get in and see. And, you’re right, some MS Nurses do know more.

If there is something serious going on with your MS, then your MS Nurse can usually arrange an appointment with the Neuro within days…………

1 year ago

@eigenhater sorry to hear your troubles, MS sucks. I can’t comment on most of your issues, but regarding walking, i’ve said it before and i say it again: i am a big believer in targeted exercises. Use it or lose it. If you experience deterioration without MRI changes, maybe muscle weakness is the problem, there is a time delay between relapse and muscle loss which goes downhill very quickly pass a certain point. I have recently discovered the MS Gym on YouTube and recommend you have a look too to see if you can relate to what he says. Not easy, it takes time and dedication but maybe worth a try. All the best.

1 year ago

I’m so sorry to hear about this, but I just want to ask what medication or DMT are you on/having as I changed my DMT after having bad symptoms for a while (sadly it did leave evidence 😢). Since changing I have had not many symptoms, but at the beginning there were a few, and no new lesions that my neurologist could see.
I’m currently on Lemtrada/Alemtuzumab which is working wonders it seems. So if you have not tried this then I highly recommend it.

1 year ago

Hi there

I’m having the exact same case is you, well not same it is the opposites way..
I was daignosed 2005 age 17 symptom 1
2010 symptom 2
I swear since 2005 they’ve bern saying its active with new lesions 2014 MS developed an atrophy without any physical sighn
Years passes without any relapse.
Now its 13 years im still 0 disability.

Im so happy for that but..
But MS
Why so mysterious son ?

What is it hiding for me…now I’m 30 is it waiting till my hair turns white 🌚 i’v
E been off DMT’s all these yrs btw

I hope you find a solution for your relapses

Be safe

@eigenhater This is a topic that many doctors think about a lot. There are some people that have so many lesions they shouldnt be alive but they show almost nothing. Then there are people that are the opposite. The reality is that there is much the MRI cant see. You might want to check what type of MRI it was. If its a 1.5T its showing much less then a 3T would show. Same brain, but a more detailed view. Even if its a 3T there is still much that cant be seen. Now in studies they are using 7T to see even more.

It sounds like you are in SPMS potentially. Do consider a highly effective DMT. Many doctors wont treat SPMS, but there is reason to think that it would be effective in SPMS. So if thats something you want to do, consider doing it while you are still considered RRMS.

1 year ago

Hi guys, thanks for all of your replys! I must apologise for not responding on this thread, but unfortunately a lot has been going on personally with my own health and some really sad news about a close family member. It is horrible feeling helpless when you should be being strong for others.

@stumbler thanks for that link, it is a very useful document! Yes the mood swings are certainly very annoying and it isn’t helpful when there are so many other issues at the same time. MS is a right old pain in the backside.

@vixen I can relate with your situation quite a bit, unfortunately. I am glad to hear that you are in a good place at the moment, but I find it quite difficult, with so much going on at such a young age, to balance all the pressures of university life, the prospect of having to find a job with a disability etc etc. I must admit I have also kinda given up calling my MS nurse, there’s nothing that they can really do at this point so I’m just wasting their time.

@noelie I took a look at the MS Gym on YouTube and it is quite interesting. I agree with your “use it or lose it” outlook, but unfortunately muscle weakness is only a small part of my mobility issue. For the most part, I end up losing complete feeling in the the muscles of my leg which is usually preceded by the typical “MS pain” that a lot of us are used to. Hurts like hell but I have so much pain at this point I don’t even care. Thanks for your suggestion, though, I will attempt to implement this!

@abbeytagg14 unfortunately my neuro hasn’t ever discussed any treatment with me, despite most people saying they get put on treatment very early. I have an appointment with a new neuro in about a month and apparently she wants to discuss DMTs so we shall see. I miss my old neuro, though, she was so nice.

@nutshell88 I am glad to hear you are doing well, and I hope you stay healthy until your hair turns white and then some! Thanks for your kind words.

@californiadreamin now this is interesting. I must admit I know very little about the types of MRI scans that are available, other than with or without contrast. I was a little surprised that this MRI was done without contrast, whereas every single MRI I’ve had before this has been done with contrast. Also yes, I agree it sounds like it could be SPMS, but I hear that’s very difficult to pin down and diagnose. Hopefully I can have a productive talk with my neuro about some treatments soon!

I also got the usual post-MRI letter from my neuro to my GP that I am always cc’d in, and in there the neuro said that my MRI shows “stable changes with no new lesions”. I wish they could spell these things out for us, as we don’t all have medical degrees!

Again – sorry for the radio silence on this thread, times have been rough.

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