Interesting see link
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Iād like to know how one āprovesā their MS is āquietly progressingā, when no new lesions show up on MRI scans. My experience of Neurologists has been if it doesnāt show up in a test, then it doesnāt count as a relapse or progression. Sometimes it feels like their word against mine, and at that point I want to point out āwell you were the ones who diagnosed me with MS!ā
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My body tells me all I need to know about progression and donāt require any other evidence.
The professor of neurology at Barts has a view on this subject.
āTelling someone with MS who complains of getting worse that their MS is stable and under control, because they are not relapsing or developing new lesions on MRI is a form of medical gaslighting.ā
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Probably by recording all your symptoms and worsening of any of them e.g my walking has deteriorated over the years. A few years back I could walk about a Km but these days Iām down to maybe a 100 metres before my leg just stops - the signals from brain to leg canāt get there and I need maybe 30-45 minutes to recover some walking ability
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Personally I follow the thinking of Professor Gavin Giovanonni: MS is MS. From what I recall the classification into PPMS , RRMS, SPMS is mainly to do with getting licences for DMTs - something to do with a faster route if the drug is for treating a condition that affects ( relatively) low numbers of people.
My thinking is very much that MS is MS. We probably all get slight or unnoticed symptoms way before we have any noticeable symptom and get diagnosed. For all of us MS is āprogressiveā at various rates - some fast some slow. Most of us also have sudden āexacerbationsā , - relapses with significant new lesions and new symptoms but even with these sudden relapses there is still āquietā progression going on.
All I can go off is my own experience my latest MRI showed my lesions were stable but my body is telling me something different. I feel a worsening of how I feel day to day than I did when I had my other scan that showed a new lesion/more activity. That and some added extra ms related medical issues. I was fully expecting my scan to say something different based on how my body is working. Of course other factors could be affecting how I feel I just know that my body is not the same as it was last October.
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There is damage to the brain that is not detected by MRI. People with the same MRI characteristics can have very different symptoms.
Post mortem analysis can detect other things but it is a bit late by then!
The work of the MS Tissue Bank depends on the donation of your brain on death.
This gives a great gift to future generations.
Hi Hank dog and to you all
I found this post really interesting and have read the information on the link. Iām PPPMS and know that I am deteriorating (or should I say my MS is progressing), again it is my body telling me that it no longer wants to walk or grip or concentrate as well as it did only a few months ago, even my neurophysio has said Iām not able to do as much as I did just a couple of weeks ago so I had a call with my neurologist and heās ordered MRIās.
He mentioned that he may well not see any new changes to the lesions already in my brain spine, but ordered brain/spinal/thoracic/cervical with contrast to check just in case.
I asked if there are no new lesions does that mean Iām imagining the deterioration (I know!!), but he said absolutely not, MS is very complicated in its progression and there can be lots of reasons behind the changes, he feels itās likely to be the next step in my āprogression ā of MS and weāll talk once Iāve had the scan.
So I have to agree that as MSāers, our body tells us that itās not playing
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Take a look at the unapproved LDN, as a possible treatment option and see if you think it might help. My GP has prescribed for over 20 years and sure it has helped slow down progression of PPMS.
Itās definitely not a DMT and unlikely to correct damage already done, but we are not exactly spoilt for choice when it comes to treatments and no harm in checking it out.
Low Dose Naltrexone multiple sclerosis | MS-UK | Choices booklet
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I do recommend looking up Professor Gavin Giovanonni and his references to Progression Independent of Relapse Activity , Smouldering Lesions etc .
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Thanks to both Whammel and Hank dogs, Iāll definitely look into the details of your suggestions.
My āprogressionā seems way too quick in my opinion, from diagnosis on 2022 Iāve gone from being perfectly able bodied to 2025 where Iām now using my wheelchair when Iām out or if Iām being obstinate and itās not too much walking (ha ha), two crutches (which doesnāt always go well for me).
My neurologist mentioned ocrelizumab (I did the tests for it in 2023 but then developed breast cancer so was told i couldnāt do that because of the cancer treatment I needed), Iāve just been offered a chance on the octopus trial too so Iām waiting for the next mri to see what to do as Iām struggling to know to be honest.
Have to say I often read both your posts and those from Graeme too them are full of excellent info and advice guys so a big thanks from me!!
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Bit of an update. I finally had an appointment with a new Neurologist. It was suggested that my relapsing remitting may now be transitioning to secondary progressive; based on clinical history.
Now what has really confused me is that a couple of current DMTs suitable for SP werenāt offered because apparently it has to be āactiveā; yet SP is diagnosed on the basis of clinical history precisely because there arenāt necessarily any new lesions which would show up on an MRI scan. The Neuro did say I had obvious weakness on my left side which wasnāt apparent at my last appointment.
Iām left feeling as though the appointment which I have waited 3 years for, was a total waste of time given that they still arenāt actually offering me anything in terms of treatment and want to stick with the wait and see approach again. What was even the point in telling me Iāve deteriorated (yes, I know that!) when nothing to help is being suggested. Or am I missing something hereā¦?
Hi @Hank_Dogs Very interesting article, I know when I was diagnosed( Feb 2007) I was told I wasnāt following the normal route, whatever that is and I was monitored for about 18mths, to see if I qualified for DMTās, then only to be told that I was SPMS and didnāt qualify as they wouldnāt do me any good, Since then Iāve progressed, now in a wheelchair full time, terrible fatigue, bowel/bladder issues, mouth issues and I could go on. When I had MRIās and was told no new lesions I did ask āwhy are things getting worseā and I was told back then that I was progressing off my old lesions and this happened with some MSāers, I was also told that I would have periods of exacerbation and then probably present a new symptom, Iām thinking, is that not a relapse ?
Sometimes itās difficult to believe what youāre being told, so basically for me thereās nothing, apart from Baclofen, Iāve tried all the other meds for nerve pain and they donāt touch it, I do have Botox injections every 5mths into my bladder and now have to do a daily bowel irrigation.
Sorry for going on and on, but sometimes you just start o feel like youāve been left on a shelf.
Take care and have a good day.
Jean
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Hi @Willowtree , Iāve just read your post and I feel for you, as this is exactly what I was told all those years ago and since then Iāve gone downhill, I would have at least liked the chance to try DMTās to see if they worked, but I wasnāt, so I feel your frustration.
Take care,
Jean x
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@greenhouse Thank you Jean. It seems to be very much a lottery - depending on where you live and what the personal opinions and attitude of the Neurologist are, rather than on what might be best for the patient. Just because a personās MS isnāt highly active, it doesnāt mean that theyāre not adversely affected by it.
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Hi @Willowtree I totally agree with what youāve said, my MS affects me very much and my hubby whoās my carer, I always say āyou try living like thisā that doesnāt go down well.
I know for me at the moment something is going on, because for the last couple of weeks things have really gone up a notch, so once again Iāll get in touch with the nurse and see what she says, Iāve already done a urine sample, so know it isnāt an infection, so itāll be blah, blah, blah.
Take care and have a good day.
Jean x