Hello all! Awaiting a diagnosis despite clear MRIs in the past

New diagnosis and before diagnosis
1

Hi all,

I’m new to the forum and just thought I would add a bit about myself and my journey so far, plus ask a couple of questions if that’s OK. I’m Becky, a 46 year old Sheffielder, and I’m awaiting the results of my latest MRI scan.

My neurological journey began around 11 years ago when I started to suffer from really ‘heavy’ legs. I couldn’t walk far without terrible fatigue and fell a lot. My hands were also very clumsy and I dropped things constantly. I was referred to the neurologist for a physical exam and he sent for an MRI and lumbar puncture as he suspected MS. Both came back absolutely clear.

Onto the next round of tests. Multiple blood samples were taken (all fine) and a genetic screen was done for potential hereditary illness (again all clear). I was then diagnosed with Spastic Paraparesis, put on Baclofen and quinine to help with the cramps, jerks and spasms in my muscles and sent on my way. My neurologist basically said that he didn’t want to see me any more unless my symptoms got worse, as all I could do was manage my symptoms.

Around 6 years ago I started to develop a range of other symptoms and another MRI was requested. This showed a ‘shadow’ on my brain and so a further CT scan of my brain was requested along with nerve conduction studies of my limbs, but these came back clear and so no further action was taken. My muscle relaxant medication was increased and I was discharged again!

Fast forward to June this year and I was at my GP again as the burning pain in one of my my thighs was unbearable. I fortunately saw a locum doctor and she prescribed me Gabapentin which cured the issue straight away (which was annoying as I had been complaining about this pain to my regular GP for 3 years who had been prescribing co-codamol), but she also referred me back to the neurologist. It seems in the intervening years my old neurologist had left and a new one arrived. He told me that there is no way I can have Spastic Paraparesis, as after 10 years I should be having some severe symptoms that I don’t seem to be having. He then gave me another physical exam and suggested that I was showing signs of MS and requested a brain and full spine MRI with contrast, which I had last Friday (30th November).

I have to admit my symptoms do sound like MS but I would have expected my initial MRI to show some sign of it. My symptoms at the moment are:

  • Double vision (my optician states this is a muscle control and not a nerve problem as it tends to happen when I am fatigued. I’ve only been having this 6 months);
  • Fatigue (At the moment I’m managing OK and work from home most days which allows me to have a nap in the day);
  • Stabbing and squeezing pains around my ribs that leave me unable to breathe (strangely these only seem to happen while I am asleep and wake me up. The first time it happened I thought I was having a heart attack!);
  • Muscle stiffness in my legs with jerks and spasms (managed pretty well by a mixture of Tizanidine and Clonazepam at low doses). This is my longest lasting symptom at 11 years;
  • Balance problems (probably the biggest of my issues. I fall maybe half a dozen times a day - over my own legs, over carpets, up steps etc.)
  • General clumsiness (I drop things constantly as my hands don’t seem to be able to grip)
  • Burning pain on my top lip (it feels like someone holding a flame to my face);
  • Pins and needles in the right hand side of my back;
  • A pain in my left arm that feels like a blood pressure cuff on the top of my arm. The bottom of my arm feels like there is no blood in it;
  • Burning sensation in one thigh and a constant ‘shin splints’ feeling in my shins.

And that’s just the current symptoms! In the past I’ve also had:

  • Two periods of severe fatigue lasting up to 6 months (the first attack was so severe I was hospitalised as I collapsed in the GPs waiting room as I was too fatigued to stand up);
  • Emotional issues (lots of tears or laughter for no apparent reason);
  • Paralysis of the full right hand side of my body including face (normally after taking a bath);
  • My personal favourite issue, a problem with my teeth where it felt like they had all been taken out of my mouth and put back in the wrong order (that one gave my dentist a laugh!). I couldn’t chew properly for a month as it felt like I had someone else’s teeth in my mouth!

I have to admit, a lot of these things I haven’t even bothered to report to my doctor as I was worried about being thought of as a hypochondriac. The only ones I have spoken about to my current neurologist are the burning pains, balance problems and muscle stiffness as we didn’t really have time for a full consult. I also can’t see how I could have MS when two previous MRIs (brain and neck in 2007 and brain and upper spine in 2012) were both clear.

Has anyone else had clear MRIs that then resulted in a positive diagnosis? This is the first MRI I will have had with contrast. Does that make a difference?

Thanks in advance!

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Hello Becky

How strange. Yes, you are right, although your symptoms do sound quite MSy, having had MRIs and a lumbar puncture previously that were all negative, it probably isn’t MS.

If you’ve not had periods of remission from your main symptoms, then chances are the brain MRI with contrast wouldn’t show up enhancing lesions (which show up inflammatory activity) as it doesn’t necessarily sound like you’ve been having relapses. Apart from the episodes of fatigue and the teeth thing, possibly.

You sound similar in some ways to a previous member of this site. She was initially diagnosed with primary progressive MS, then after 10 years rediagnosed with hereditary spastic paraplegia. Finally after genetic testing, it was clear she didn’t have HSP. So was left with an open ended non-diagnosis of ‘sort of spastic paraplegia’. At that point she again asked the neurologist very clearly whether it could in fact be MS and was told no, it couldn’t.

I suspect that sometimes there are just weird things happening to the nerves in our bodies that just refuse to fit into anything as specific as a straightforward diagnosis.

Meanwhile, all you can do is see the neurologist again and find out what the new MRI scans show up, and of course, what the neurologist thinks. It is still possible that it’s MS. It just doesn’t seem to me (or to you I suspect, reading between your lines) that MS is a likely diagnosis. But not being neurologists, what do we know?

Please come and let us know what happens next Becky. You might just be a medical marvel! Best of luck.

Sue

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Thanks Sue,

You are absolutely right. I really don’t think I have MS as, as you rightly say, my main symptoms of balance issues and muscle pain / spasms have had no relapses and are just getting progressively worse.

The SP diagnosis came in when I mentioned that my father and grandfather had similar symptoms but were diagnosed with arthritic conditions (the hospital went to the trouble of digging out my dead fathers medical records to check his symptoms). My previous neuro was very dismissive when I asked if I actually needed to see the rheumatologist; he just said ‘no, this is definitely neurological’ and stuck an SP diagnosis on me.

My current neuro thinks that I don’t have SP as he says I should be having bladder problems by now and my walking be much worse. I walk with a pronounced limp due to pains and weakness in my hips and thighs but that’s about it, apart form the other weird and wonderful things mentioned above. No bladder issues at all.

At the moment I’m kind of hoping that I’ve got some sort of cord compression that can miraculously be cured and I can go back to being the active person I once was (which might be expecting a little to much!)

I’ll update once I get my MRI results, just to add some more info to this amazing resource!

Bex

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the main thing is not to panic ahead of time, waiting for the result))