Hi So I’ve had ongoing symptoms after my first attack at Christmas last year. I had an MRI which showed lesions in my brain and one in my spinal chord. I recently had a lumber puncture about a month ago and got the results. It showed that I had antibodies in my spinal fluid. The neuro says although it points to MS he hasn’t diagnosed MS yet. Do I just assume that it is MS or is there a possibility that it might not be still? So confused if appreciate some advice. Thank you
Hi Imo86 To diagnose MS there needs to be evidence of the multiple. It sounds like you’ve had one distinct episode but are the ongoing symptoms you have new or old? If they’re new that suggests more than 1 fulfilling the multiple part. The neuro may want to repeat MRI to look for further lesions to support this. This is the case for relapsing remitting type ms - primary progressive is a little more tricky. I would google McDonald criteria for diagnosing ms and ask your neuro where you fit according to it. Would you be eligible for disease modifying drugs etc In some cases you can have one episode of symptoms but never go on to have any further. If lucky you may completely recover but not always. Hth Reemz X
I’m a likely PPMS case and I pushed my Neuro because of that, I asked if he was certain it was MS and he said “undoubtably”, just the type of MS wasn’t yet clear.
I didn’t need a LP thankfully as I had 2 MRI’s with lesions and my physical exam was embarrassing (yes, I nearly fell over)
Ask for an answer & bad luck on the general direction of your diagnosis
If they have refused to diagnose, that must mean all the evidence is not there YET, otherwise they’d have gone ahead. So yes, there’s still a chance it might turn out not to be. I have to admit, it doesn’t sound like a particularly big chance, but the reason they have diagnostic criteria is to prevent mistakes being made, so if you’re not diagnosed yet, it must be because they still don’t have the required level of certainty. You should not assume anything.
The way my neuro put it is: “Common things are more common”, so as MS would be the most common explanation for your symptoms and test results, it’s the odds-on favourite, but there still might be other, rarer explanations.
As Reemz has suggested, he may also be doubtful whether you have had more than one attack. Some people only ever have the one. If that happens, it doesn’t satisfy the “multiple” bit of multiple sclerosis, so would usually be diagnosed as “clinically isolated syndrome” (CIS) and would only be changed to MS if there was clear evidence (symptoms, MRI, or both) of a subsequent attack.