That is exactly what people call it ;-0 Limbo land. The uncertainty is frustrating and it makes it hard to plan for the future. I guess we should all do what we can every day but it kind of looms over you. I totally get it.
If you have an MS expert you are ahead of most. I, thankfully, was referred directly to an MS expert at one of our local top universities and once I got to him I was Dx rather quickly.
It was like 10 years later when a relapse couldn’t be seen on a brain MRI that they did a spine MRI and when they saw the lesion there became concerned and sent me for a blood test to check for NMO which I had never heard of! I didn’t want to borrow trouble ;-0 Then to find out that I may have been taking very expensive drugs that were a literal pain to take every day (Copaxone) that may not be effective for my disease at all…I was pretty pissed! the blood test is only a few hundred dollars and they don’t routinely give it at the very beginning? I’m a cost accountant and it totally doesn’t make sense to me…To have spent that much on a treatment that might not be effective…ughhh…but I don’t have NMO and I suppose should just be grateful of that.
Anyways…keep pushing for the Dx. Many talk about keeping a “MS diary” where you write down all your symptoms, their severity and frequency, etc. to help support your Dx and demonstrate the impact on your life. Also think back and try to document your earliest symptoms. When I was Dx I’m not sure if they really thought that much about CIS or I just had a long enough history and convincing enough MRIs that I was just put on Copaxone immediately.
Hopefully you can put together a case and are listened to 😉 we have to be our own best advocate sometimes- Good luck!
Since my early days with MS I have had attacks and relapses, typical RRMS but in the last 5 years or so haven’t had any attacks, which is good, but what I can do slowly slides. I now tire easily and get hip pain in my right hip and foot drop on that side. The foot drop has probably been going on for longer than I realized and the resulting wear resulting in needing a hip replacement. I battle through strength issues on that side. I try to push it too much once it starts to hurt knowing that I can’t muck it up too bad and jeopardize it or my knee or SI joint. I try to behave but am the type that doesn’t always listen to her body very well ;-0 trying to get better at that and acknowledge that I don’t respond that well to pain and make a conscience effort to pay attention to what my body is trying to say-