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Anxious and Impatient!

Hi everybody. I had an LP two and a half weeks ago, and an MRI a weeks ago tomorrow. My questioned is for those already diagnosed with MS, how long did you have to wait following your MRI and/or LP before diagnosis? Kaz xxx

Hi Kaz,

MS is potentially a long and very difficult diagnosis. You need to prepare yourself for the possibility that even if your MRI and LP both show findings consistent with MS, you may not proceed immediately to diagnosis. They have to be certain you’ve had at least two separate episodes or “attacks”, or continuous deterioration for at least one year. A single MRI usually cannot prove that, because it only shows a snapshot in time - it cannot show whether damage resulted from a single episode, or many, or over what period of time.

Similarly, more than one part of the CNS (brain and/or spinal cord) must be affected. If your scan shows damage, BUT only in a single location - again, it’s not sufficient for diagnosis.

To answer your question, I did not have a LP, but I was diagnosed approximately 8 months after MRI. This was going privately, so it had nothing to do with waiting lists being long, or processes being bureaucratic, but everything to do with the above conditions for diagnosis. My first MRI (or strictly, first batch of MRIs, as they ran several) DID show abnormalities typical of MS, but they couldn’t prove beyond doubt that’s what it was, as it could have been an unlucky one-off, that just looked a bit like MS. So they scanned me again six months later, which showed clearly there had been new activity, which meant it couldn’t have been just an unlucly episode.

By the time the results came back of the second MRI, and I got an appointment for the follow-up consultation, at which I was diagnosed, it was, all told, about eight months from when I’d first been scanned.

That’s still relatively fast, compared to some people. So I don’t mean to be the bearer of bad tidings, but try not to get too fixated on getting answers in the next week or two. It’s possible, but judging by the majority experience, not very likely.

Tina

Well I was the anomaly! I was dx 4 days after MRI which were about a week after I saw neurologist so mine was super speedy. From what I’ve read here and on other sites though that was very unusual.

Thank you both :slight_smile: Tina, that’s really helpful, thank you. I think at this stage, although I’m anxious for some kind of diagnosis, right now I’m just watching the post for my follow up with my neuro. I’m worried that the tests will show nothing and I’ll be back to square one. Even if a diagnosis can’t be made right away, it would be a step In the right direction to know if we’re even on the right path. Xxxxx

It’s just occurred to me that anyone reading these forums from the outside would think we were all mad. Hoping for positive test results and diagnoses must seem terribly odd to anyone not going through this limbo.

Hi I had brain scan end of April and was diagnosed 2weeks ago, just waiting for lumper puncture and got an appt to see ms nurse in 2 weeks xx

Ok so that’s all reasonably quick. Guess I just have to grit my teeth and be patient :slight_smile: xxx

Hi kaz I’m in the same situation as you. I’m not 100% sure but I’m sure I’ve read somewhere that sometimes it can be quicker if you have contrast MRI as that can show the diff between old and newer lesions - so you get the evidence of change over time from a snapshot if you see what I mean. So maybe for those who have been quick dx thats helped. If all MRI signs are same or similar age it might be single event hence waiting for few months to see if there is change over time. I had spine MRI first without contrast and now waiting for contrast MRI of brain so I’m hoping that will speed it up! Trying to focus on making best of each day rather than just waiting… C x Ps Hugs - if you have dx why do u need lp too do u know?

Hi Clare I just spoke to my neuro’s secretary. She says he is on holiday but back on Monday. She estimates I should get a letter around the 16th which will advise whether I need further tests it an appointment. She said if my tests are all clear I will get a routine follow up in around three months!! She wasn’t looking at my case specifically and I really hope if my LP and MRIs are negative that I would have an appt sooner than that to discuss alternative possible diagnoses. My legs seem to be getting weaker and I’m still struggling with relentless fatigue, so I reality hope the tests will have some answers. xxx