So today is a bad day for me. It started last night when my legs kept giving way and I had a job to stand. I feel very tried today and everything hurts, I have a job moving limbs and speech is a little wobbly here and there, my hearing is a lot lower than it should be and my eye sight is really struggling. …But I’m keeping smiling despite all this as I haven’t been diagnosed yet, my scan is on Thursday and in the back of my mind I can’t help feeling awful for calling this a bad day or guilty. I feel like if i knew is was MS i could confidently say ‘this is a bad day’ because I knew the cause. Without it I keep thinking what if it’s not that? I know they most likely wouldn’t send me to see a MS specialist if they didn’t think that was what it is, but there is still the what if and that makes me feel guilty.
Does anyone else feel like this sometimes before diagnoses?
Getting a diagnosis of MS isn’t something you’re supposed to ‘want’. But getting an answer to the lousy symptoms you’re experiencing makes being diagnosed with something extremely desirable.
Living with horrible symptoms and not knowing why, ie in limbo, is dreadful. I see lots of posts from people who’ve been suffering with MS like symptoms who very definitely want to be diagnosed with MS.
Having a diagnosis gives you something concrete to a) tell other people, and b) feel within yourself. It also holds the key to treatments, drugs, physio, an MS nurse (which you may already have, some people do and others don’t, pre-diagnosis) and most important, disease modifying drugs.
Don’t beat yourself up about wanting an answer, any bloody answer.
I hope your MRI scan goes well, you get the results quickly and that all important answer.
That is good to hear. I don’t particularly want to be diagnosed with anything. I think it was more the feeling guilty, not feeling like you can say or tell people what your feeling as not wanting to sound like your moaning or complaining if there is nothing wrong.
Hi Lottielu, I’m in same place as you, waiting diagnosis, wondering what’s going on and, yes, feel guilty sometimes but don’t really know why. I tell myself “what the hell feeling guilty for, not done anything, these symptoms are new normal, can’t help it”. So don’t feel alone, its a strange limbo place, mind games where brain is trying make sense of the unknown, as yet. I hope you get your answers soon, but at least can come back here and know others know what its like. Keeping mind fixed on other things is the key, but v hard to do when feel so bad.
You’re definitely not alone. I’m also in limbo and completely symptomatic. I’m currently waiting for the results of my latest MRI that will either confirm that it’s now MS or whether it’s still CIS… and as I still feel so crap with fatigue, numbness and twitching I really don’t know what’s the best result. The guilt I feel really doesn’t make any sense. I guess it’s because I feel like I’m claiming my symptoms to a disease that I’m not yet or may never be diagnosed with, but as that’s what the drs are investigating, that’s all I have to go on. I imagine no one wants a diagnosis of MS, but limbo or CIS (with a high conversion chance) will drive one potty. I’m even starting to convince my self that’s it’s all in my head, no pun intended!! Hope you get answers soon x