I’m undiagnosed. I’ve been ill really since 2011/2012 , but because of my age it was put down to stress. I’m still in a horrible limbo 3 years on. I’ve been using a wheelchair since summer of 2013. With no diagnosis I was sent by a neurologist to a phycological team who told me there was no chance I could have MS. I’ve recently been told that MS hasn’t been ruled out and my symptoms fit. So another round of test including lumbar puncture to come. All whilst I have a phycologist telling me im paranoid and to let it go. I’m supposed to be applying for uni this year but I don’t feel like I can from my position. I barely make it to college as it is and my health has been so spordic I don’t see how I can consider without a diagnosis or at least a treatment plan of some kind. Any advice would be amazing I’m just really stuck right now.
Hi Ellen, I’ve been in limbo myself since 2012. In January this year I got a diagnosis of FND (with CFS) because tests including MRI had come back ‘within normal limit’. I started walking with a stick in July and now use a wheelchair occassionally and recently got a mobility scooter to cope with the four miles a day I had to do on the school run.
I keep a symptom diary and summarise it when I have any big appointments coming up. I’ll be seeing a neuro again soon and will be asking for more tests, a definitive answer as to why I was told FND (exclusion doesn’t cut it, there should be positive tests).
Keep records, inform yourself, keep pushing for clear answers and be loving and gentle with yourself. Stay in touch with us here - this support network helps me to persevere. Good luck!
Thank you so much, it’s such a weight off my shoulders to know someones listening. I’ve spent so long not knowing which way to turn if any and knowing there is a place to go to when things get tough or when I get confused. Thank you and good luck to you too xx
Eee love…it saddens me so much when I read about anyone struggling in limbo…but more so when they are young and have all sorts of life plans they want to make.
I was 45 when my problems with walking began. I kept tripping, stumbling and crashing into objects.
Move on another 16 years and here I am…62 years old, with no mobility and very dependent on others for most things.
Back to you hun…
is your GP any good? He/she has already referred you to various specialists, so that tells me something good.
But why not go back to him/her and tell them how you are left…with no way forward and desperate for answers, so you can move on with life?
I spent many years in limbo and still kind of am, with only a half hearted diagnosis.
Good luck love.
Thank you xx Part of my problem has been that the GP practice I’m at is going down hill and anf my gp is one of the few who has stayed. She keeps claiming not to have received letters from consultants or tell me she has refered me to a specialist and I find out from the receptionist it hasnt been done. We haven’t been able to move practices because physio is the only thing working at the moment, and my gp has said not so subtle terms that she is the one controlling the physio referals. Hopefully this will be sorted just another thing to add to a bad situation. Now not only do I feel like I cant trust the neurologist at the local hospital now the GP is problem. It doesnt help that she work for 2 weeks then is off for a month. Last week me and my parents sat down with her to review my case. After we told her about all the gaps in my file she didn’t really have a conter argument she has reffered me to a consultant how can then ask for tests but first I have an appointment with a cardiologist (??). After this at I havd a nerve conduction test with an oropedist for some reason . I get a bit lost by that point. Hopefully somthing will come from the tests ( good or bad ) and ill be somewhere with a plan. But hopefully when I have questions I’ll be able to come here to the forum and ask. Thank you so much forbyour comment it feel so good to be heard. Sorry for my rant about the gp . Wishing you the best xx