Stable MRI's But Feel Worse Than Ever!

Everyday living
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Hi everyone,

Haven’t been posting much lately but have been answering on a few other threads as am beginning to feel like a more seasoned member of this club that none of us want to be in!

However, seeking opinions (obviously non medical and only based on your own opinions and/or experiences) because I am mighty confused!

I was diagnosed with 2 spinal lesions in 2018 but had consulted GP with symptoms in the 2017. Lots and lots of little things right back to my 20’s indicated that I may have had MS for as many as 25 years.

MS nurse later said 5 very small lesions in brain but Neuro had dismissed these as unimportant.

So, diagnosed with RR on basis that after IV steroids, my symptoms on my right side hip/leg/foot and my bladder retention mostly resolved.

BUT… since then have developed the following:

Left Side constant burning/stabbing/crawling/itching/numb/hypersensitive/tingly/crampy from hip all the way down to and including sole of foot. Spasms mostly in left leg but sometimes right too. Very noticeable weakness in this leg, drags after I walk any distance and for example no strength in it to push myself up if kneeling down.

Difficulty swallowing which comes and goes, tightness in throat, difficulty pronouncing words properly

Excruciating Trigeminal Neuralgia presenting on right upper/lower jaw acutely for 4 months last year, nothing helped. This has now evolved into a constant feeling of ‘threatened’ TN but in both sides, cheekbones, roof of mouth, ears, and nose with some horrible stabbing pains in ears. No triggers, teeth issues ruled out, no ear infection. MS team say not MS related as no brain stem lesion???

Losing balance for no reason and walking into doorframes etc

Widespread pain in all joints, worse in mornings (GP considering referring me to Rheumatology for this)

Both feet feel like they have been stamped on and like I am walking on sharp stones

Both front of shins just under knees feel too tight and painful to walk downstairs or downhill.

Leaking wee which I can’t feel and loss of sensation in ‘saddle area’ generally with either urinary urgency, or reluctance!

Heavy fatigue and general mental slowing

Walking like the tin man, seem to have limited range in knee and ankle on left.

And other bits & bobs.

HOW can all this come from the original lesions from nearly 3 years ago? If I’m RR, why do I feel like I’ve had relapses/new symptoms but nothing shows on MRI?

I can’t seem to get any sense out of anyone on my MS team, they just keep booking MRI’s and then saying everything is stable.

But I’m not the same as I was in 2018…I just don’t understand. Lesions in 2018 caused issues mostly on right side. Now, things are either bilateral or on the right.

Can anyone help?

So very sorry for the long post, Minnie x

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Minnie

I know the feeling, you think that once you have a diagnosis things will get better (in an ideal world they would) but the world is not ideal.

Try to address your individual symptoms one at a time with the support of your GP.

  • Bladder issues - unfortunately Covid probably means that it won’t be possible to be seen at the bowel and bladder clinics but I will cherry pick some of the help I had from them. Betmiga is a tablet for an overactive bladder. Ask your GP to prescribe. Intermittent Self Catheterisation has been a great help and continues to be so.
  • Massage - try having a massage, it can be uncomfortable (Sports massage certainly is) Aromatherapy massage can be bliss.
  • Well placed grab rails to help get up from the floor (I have a very undignified way of rising bum first and it takes me ages to do).
  • Ask for a referral to Speech Therapy to address the difficulty swallowing and pronouncing words.
  • Accept the need to slow down for the sake of your own safety (that is really hard).

It is frustrating when you feel left to flounder alone but you have the strength and tenacity to do it.

Dig deep Minnie.

Wishing you well

Carole x

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the trouble is MM when you get a diagnosis of MS thats it, no one looks at anything else. for example JOINTS PAINFUL is that an MS symptom?

TM can come with its own symptoms but isnt necessary down to MS, i have a friend in USA who had it was in terrible pain and eventually they had to do an operation and he is now been on the mend for several years. he never has had MS.

anyway joint pain could be you have something else, arthritis or another disease going on? It might be also down to your posture and the way your walking as well.

LESIONS on MRI do not necessarily mean much in the way of progression or lack of.

Did you have RRMS or was it PPMS? that is the question.

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Unfortunately, damage is going on all the time and not always picked up by MRI.

Smouldering MS: does it exist? – Multiple Sclerosis Research Blog (multiple-sclerosis-research.org)

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mm

just wanted to let yuo know that i read yuor post and am bursting with things i want to say but…

manty yeasr ago i very quichklky realised th at i was completely alone in dealing with my ms. dont misunderstand me-my family/friends and SOME professnals ‘get that’. my reality is…i woulkd love to be a ‘text book’ case but neither mre or any one of us are!

theer is no cure. we are all trying to live a life (in our own way) some folk like inspirtional quoted-my fridge is covered! i am aware of some specigic to ms-we are all in same boat blah blah. i chose that one as examlpe cos my own adapted version is ‘we are in the same water bur in singkle canoes’

communication is the answer in most sitautions-its hard initialyy but once you get your head round it all and the folk that love and care for you understand they cant fix you then hoest real talking is myuch easier for all involved.

yuor post realyy touched me and knew i had to reply. i realyy hope you you get yuor canoe under control wink

el

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I have long believed that MRI’s only show the tip of the iceberg and aren’t reliable, but that’s because my health has steadily deteriorated for 40 years while not showing any lesions until about 18 months ago. I really believe that they need to move away from the McDonald criteria and look at other factors.

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Thanks everyone. I think what I’m struggling to get to grips with is how much worse I feel than when I was diagnosed! It’s like my neuro team think nothing matters as MRI’s are stable.

I can completely believe that damage is ongoing… Whammel I’ll have a read of your link, thankyou.

NorasMom - yep I agree.

GP is hopefully referring me to Rheumatology also, and to Maxillofacial for the TN/facial pain.

It’s really hard when they won’t even see me face to face and ask me to send photos. How on earth do I send photos of facial pain hahahahaha - unless she wants to see me howling in agony!

I’m guessing not all relapses show on MRI… or that maybe I’m transitioning to SPMS. Who knows :frowning:

Interestingly, I’m on Copaxone - one of the less common side affects is joint pain…but everyone poohpoohing that as well.

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Good to hear you should be being referred to rheumatology and more. Sounds as if your GP is able to think beyond the MS box.

As for MRIs appearing stable - or rather that lesions as shown on MRI appear stable, MRIs are only capable of picking up larger lesions in the white brain matter. They don’t pick up micro lesions, which are part of MS. But each lesion is an area of damage in the brain, so your neuro is wrong to dismiss your new, visible small ones as unimportant. They may be caused by MS inflammation / demyelination, or they could be caused by other things such as high blood pressure and / or high blood sugar levels, so it is always good to keep an eye on those levels and modify lifestyle accordingly if they are up.

Inflammation is usually the cause of the MS white matter lesions, but there are other changes / processes going on in MS beyond inflammation, and so just focussing on lesions misses that. The standard MRIs don’t pick up degeneration in the grey matter except at the macro level - i.e. when it has progressed to obvious brain atrophy. There are different types of scans that are much better at picking up earlier degeneration in grey matter, ie thinning, which happens before atrophy becomes really evident, but these are, I think, still only used in research situations and not in normal clinical practice in the UK.

I agree with NorasMom. The McDonald criteria was drawn up to standardise MS diagnosis, based on certain markers that are relatively easy to spot on MRIs, but now seem to be taken by intellectually lazy neurologists as defining MS and the only tool used to measure it, and it is quick - a quick flick through the scan pictures is all that is needed. Many neurologists seem to try to avoid discussing brain atrophy, as if it is somehow unconnected with MS progression. It is possible to measure brain volume changes, but involves more time and more software, and no doubt why they don’t do it.

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Thanks for that. I read that a while ago, but couldn’t find it again, despite searching. I’ll bookmark it this time as it is clearly written and very informative.

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Deja vu MM. You’ve just mentioned some of the classical if not typical signs/symptoms of ms that we msers all / or may,have to endure at some stage aboard our rollercoaster of a journey in ms…Unfortunately!

Like changing deck chairs on the Tit#nic.

Thanks Wammel.

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Here’s a very recent post from the same source as Whammel’s link. The subject is: what is happening to us all and how. Warning: it totally is not a read for the faint-of-heart or anyone who wants to be cheered up, but it is very informative indeed.

Alison

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Thanks Alison - very interesting reading. So, much of my ‘worsening’ could be down to one of my spinal lesions still being there and down to my body being less likely to ‘heal’ it due to age.

I’ll ask about whether my 2 main lesions are still visible on my most recent MRI!

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Hi Minnie,

Reading your post sounds incredibly familiar to me, I was diagnosed with RRMS aged 17 in 1994 , 27 years ago with a “sensory spinal presentation”.

Im still very mobile all these years later, but not without and periods of incredible amounts of pain, distorted sensation and periods of crippling fatigue. Good news is that with good symptom management, the pain can be dampened right down. One word - Cymbalta or to give it’s generic name , Duloxetine. Speak to your GP/MS Nurse about trialling this Drug as it has helped me for years now.

For fatigue, nothing beats Modafinil. I’ve been on that for years too and I couldn’t have kept working without it. It’s a narcolepsy Drug licenced for MS fatigue.

Your symptoms don’t mean your MS is getting worse. It’s just that when we have relapses and accrue lesions, we alsoaccue damage and ongoing symptoms which need to be managed and got under control with a minimum dose of medication… itstrial & error, and a balance has to be struck but you will get there.

ive had nearly 3 decades of dealing with this, so if you need more help & advice, send me a msg & I’m here for you hun

Rach x

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Plus A small amount of baclofen is incredibly effective for the tin man shins you describe (I have that too) and triennial neuralgia can be treated with with carbamazepine or Botox these days. Don’t suffer in silence. You need a proper symptom management plan xx

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El

that is the best inspirational quotes I’ve seen in years.

single canoes are the way to go and ought to be well publicised!

heart

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Thankyou so much for your thoughts Glorypuss. I do take Duloxetine and Baclofen. I did take Carbamazepine but had to give that up for the Duloxetine as GP wouldn’t let me take both. I think when we can actually see med professionals again, I’ll get a complete symptoms/drugs review!