Is it worth bringing up the possibility of PPMS to my neurologist?

Hi everyone! I’m a 25 year old female and have been struggling with symptoms for a while now. Whilst I was on holiday in 2018, I suddenly felt a tight, stiff, cramping pain in both calves. I now suspect this to be spasticity, especially since Baclofen is helping, but I’m unsure. My condition would be stable for some time, but then would deteriorate. It’s gotten to the point now where I can barely walk for 30 seconds, and if I over-exert myself I struggle to even bend my legs and arms and they become incredibly weak. I’ll include my symptoms that have gradually appeared in bullet-point format below:

  • Calf stiffness/tightness and pain was my first symptom - I struggle to move and bend my legs and arms upon over-exertion - over-exertion for me can be as simple as bending over to pick something up at this point
  • Leg and arm weakness, i.e. difficulty climbing stairs and brushing my hair
  • A numb patch on my back which tingles
  • Needing to urinate often, but it feels difficult to fully empty my bladder
  • Back pain and weakness which make it difficult for me to sit/stand up straight at times
  • Difficulty with memory, focusing, and forgetting how words are pronounced
  • Struggling with balance - I’ve fallen down the stairs a couple of times in recent years and have to hold onto something to steady myself when doing something like getting out of the shower

My GP initially suspected that it was spinal stenosis, but an MRI of my lower back ruled that out. A nerve conduction study showed no issues, but an EMG showed mild myopathy. My blood tests have consistently shown elevated inflammatory markers.

After five years with no answers and being on NHS waiting list after waiting list, I’m desperate for answers. So, I’m just curious - does this sound like PPMS to you? Does anyone with PPMS relate to these symptoms?

Stick with it Kim!
The only way you’ll get answers is to be persistent and shout loudly. Unfortunately that’s often what’s needed to be heard.

We’re not Doctors, so can’t offer a diagnosis but…
I was diagnosed with Lumbar Spinal Stenosis for many years and a textbook case, apparently, until someone had the bright idea of an MRI and the spinal column turned out to be capacious. Neuro’s then looked at Cervical SS and there was indeed some constriction. They thought the pains could be getting referred into my lower back. I even had an op but not before I got a head scan which suggested MS.

You’re enlightened - already considering the issue could be in your brain. If I were you, I’d consider CSS, displaced vertebras. Also, demand a lumbar puncture to determine if there is oligoclonal banding in your CSF. Before MRI’s, LP’s were used to diagnose MS and still a valuable cross-check. Your GP may be able to order a LP, or might send you to a Neurologist for it to be done.


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Hi Graeme, hope you’re well! Thank you for your kind and encouraging words, and I’m sorry to hear that you were misdiagnosed for so long. Can I ask, did they initially think it was spinal stenosis due to calf and back pain? As they’re my most troublesome symptoms.

I will make sure to bring up the possibility of MS and the additional symptoms I’ve been having in my neurology appointment next week. It’s just been such a long process already. I’m in terrible pain everyday, and orthopaedics went as far to blame it completely on my mental health. I’m glad that I’m being seen in neurology now, which seems more well-suited based on my symptoms.

Thank you again for your reply, Graeme - all the best!

Hello again
As for the LSS, I never had calf pain but definitely had lower back pain & stiffness extending into the hips. Still do! In fact along with my PPMS diagnosis, I am recorded as having chronic lower back pain as the extra stuff is masking the extent of my MS condition.