How did you finally get your diagnosis?

Simillar to the other thread about your first relapse. Would you be kind enough to explain what finally prompted you diagnosis of MS?

What factors were considered when the neuro made a diagnosis? Also which tests did you have to have done to get a full diagnosis?

Thank you

MRI, physical examination and visual evoked potentials tests diagnosed me with CIS. They tried and failed to do a lumbar puncture on me 3 times and then I got a blood clot so they couldn’t attempt again.

Things finally came to a head (wrong word, I suppose) when I woke up one morning to find I’d lost ALL sensation in my feet, and my intimate parts weren’t right, either. Bizarrely, looking back, I still didn’t treat it as an emergency, even then. I quickly dismissed that I’d had a stroke, as I seemed perfectly lucid, not slurring, no pain anywhere - in fact, less than usual, as my previously ever-painful feet had quit reporting on that, and movement and coordination were normal, so it was literally just the loss of sensation. I’d had hints of it in the past, albeit not as profound, which had always gone away by themselves, so although I did begin to consider it was some kind of spinal cord thing (Correct!), I thought, yet again, that it was some kind of strain or sprain. I actually thought I’d strained myself on the loo, can you believe it? (Though despite now being diagnosed, I’m still not 100% convinced that had nothing to do with it, and am very careful not to strain excessively on the loo). Anyway, still believing it to be an injury, I waited a few days for it to start healing by itself, as in the past. But when there was no improvement after four or five days, I at last began to grow worried, and booked a doctor’s appt. Doctor also thought it was most likely to be an injury, telling me it was very unlikely to be anything sinister (I suppose she meant a tumour), but that I probably had a slipped disc. Luckily, at the time, I had private health insurance through work, so she booked me in to see a neurosurgeon almost straight away (on the assumption the slipped disc might need repairing), and he ordered a spinal MRI to check location and extent of the damage. MS still not in the picture, at this point. But when he looked at the MRI result, he was surprised to find NO slipped disc, as expected - nothing for him to operate on. Fortunately for me, he was pretty on-the-ball, and spotted a tiny abnormality, which to me looked as fine as dental floss, or perhaps even a wisp of smoke. He said: “I want to know what THAT is!” I think he knew full well from that moment what the implications were, though out of professional ethics, he didn’t share them with me, as he would not have been qualified to dignose MS. Instead, he referred me to a colleague, saying he’d like a second opinion. I knew something was up, as he shook me by the hand, and wished me good luck. That isn’t normal when you leave the doctor’s, is it? I was thinking: “Heck! What do I need good luck for?” Of course, I got straight on Google to check out who I was being referred to. It was obvious he was an MS specialist. And the rest, as they say, is history. Though it still took approx. another eight months to get a confirmed diagnosis, but more-or-less knowing it was MS this time. No surprise at all when I was finally diagnosed. Ultimately, I was diagnosed on MRI evidence and symptom history alone, as VEPs were normal, and I refused a lumbar puncture. Had a whole battery of blood tests and a couple of X-rays to rule out other nasties. Every case has the same diagnostic criteria, but the exact path 'til all the evidence is in can still vary almost as much as the presenting symptoms. For example, it’s not normal to find out by way of being investigated for a slipped disc, but not that rare either. Just the way it worked out for me. Tina

I’d previously had separate referrals for suspected carpal tunnel syndrome and dodgy eyesight (three glasses prescriptions in three months!), but I put two and two together when I started getting numb patches of skin. I was referred privately to a neurologist who actually said he didn’t think it was MS and said he wouldn’t recommend any investigations at that point. About four weeks later I woke up slurring my speech, unable to get my words out and with VERY blurry eyesight and headed off to A&E suspecting a stroke. They sent me straight back to the neurologist! MRI the same day (thanks to being private) and back to neurologist four days later to be told, “sorry, it is now very likely to be MS”! Reviewed again after four weeks to be told it was definite MS. So from very first neurologist appt to full diagnosis was around two months, although it was probable after one month! In hindsight my “carpal tunnel syndrome” was probably my first noticeable relapse a year previous although I think there’s been other symptoms even before then. I refused the lumbar puncture and was diagnosed with MRI and clinical history, plus after dx I had extra bloods to rule out Hughes Syndrome. My VEPs (again after dx) we’re consistent with MS. HTH x

My toes and fingers started to feel fuzzy and tingly on a Thursday afternoon. By Friday morning they felt worse and it was spreading all over my hands and feet. As I had been in hospital just three months earlier with my first symptoms and had been told it was demyelination, I knew the most likely outcome was MS but that this wasn’t an emergency. I went to the GP Friday morning and he faxed my neurologist who said he would fit me in for an appointment asap.

Over the weekend the loss of sensation continued to work its way up my body - by Sunday morning even my bottom was numb. I heard back from the neuro with an appointment for Thursday by which point I was completely numb from my waist to my feet and my hands were very tingly so that I was constantly dropping things. I couldn’t feel the neuro sticking pins in my spine or moving my toes about so I was admitted for a 3 day course of IV steroids. My discharge paperwork says MS but my formal diagnosis came a month later at the follow up appointment with the neuro.

Tracey x

When I went into hospital in June with the loss of feeling in my feet, balance and confusion issue I was diagnosed with CIS after both my MRI of my brain and lumber Puncture showed signs of MS. They told me then it was a 95% chance I had MS. I then had another MRI in August which showed further inflammation. So was diagnosed with MS but not 100% sure on type. Due to me having further symptoms when I seen the consultant at the end of September. I was sent for another MRI mid October. I have the hospital next week to discuss the results and hopefully get an understanding of the type. Polly x

Thank you for your input, anybody else care to tell their story? Is everybody else in limbo too?