New to the forum and to the whole MS world but am slowly reaching the end of my tether.
Husband was told in January “showed signs of MS” after having an MRI scan for an unrelated matter. We privately paid for a neurologist, who examined him and from those tests stated 99% certain its not MS (he was not symptomatic and as far as we are aware he still isn’t). Only way to be certain was to either have another scan, or to 100% draw a line under it a lumber puncture - which is what my husband elected to do.
Fast forward to the results and he is told, the lumber puncture does show that he has MS. He will now be referred to an MS Team. 5 weeks later we are still not making any progress with a referral or actually getting any information which is useful or helping us. Yesterday, he spoke the his GP and she has received a letter from the neurologist which details the test results, but also says - “he’s reluctant to give a formal diagnosis” at this point and that he’s basically asking the MS team to provide a second opinion. The letter to the MS team does not include this details and is a straightforward referral.
Has this happened to anyone and is it normal? I thought from previous conversations that the lumber puncture would be a definitive answer for us and not again be plunged into this circle of uncertainty and worry. Why would the results be disregarded and where do we go from here?
Is there a reason for the reluctance in a formal diagnosis or to be cynical is this all down to funding and service provision? I assume that without a diagnosis he will not be eligible for any treatment/preventative treatment options that may be available.
Would be grateful for advise/ experiences that anyone is willing/able to share.