Hi Can any one else tell me if the Consultant refuses to diagnose MS even although I have all the symptoms, but my scan was clear?
I have been in Limbo for 6 years and the symptoms are progressing but still no diagnosis.
I think they use it as a tool,using them to rule out everything else that it could be they then look at what’s left. Did your neurologist order any other tests and the fact that he/she has still kept you on the books all that time. When I had my appointment with the neurologist he told me that the problems that I have could be my thyroid or pills, and that my white matter changes could be from migraines. Although he has put me forward for another appointment next year, I don’t know if I will have to go and do the tests again. Good luck Kay
I have had the same worsening symptoms for over 6 years, my own GP has thrown thing at me about M.E and also Fybromyalgia. Its so frustrating. I hosted a very small dinner party o Saturday and it has left me really fatigued and the brain fog is terrible, not to mention what its done to my muscles. Its more a daily thing now and that is what frightens me .
My understanding (which is incredibly limited) is that the McDonald Criteria which is used to diagnose MS must include MRI findings. Without any MS consistent findings on an MRI, a MS diagnosis cannot be made.
I’ve only been in limbo for a few months and it feels like it’s been such a long time so I can’t imagine how you feel after 6 years of not feeling well with no answers.
Do you have another apointment scheduled with your neurologist? If so, keep discussing your symptoms and ask for their guidance on next steps / determining the possible cause. Hopefully a neurological assessment will also help identify the possible cause of your symptoms too. If you don’t have appointments with the neurologist, arrange a GP appointment to discuss your symptoms. Have you had blood tests etc to rule out other possible causes? Have you had recent MRI or only 6 years ago?
Sorry if none of the above is much help. I hope you can get some answers soon and most importantly, start to feel better.
take care,
Thank you for your kind words.
I spoke to an MS nurse today and he has advised seeing the neurologist again, so waiting to get that organised.
I have 2 cases of optic neuritis which alerted them to the fact something was wrong. In the beginning the symptoms were not as bad as they are now and they certainly did not feel to be all the time. I have all but given up my social weekends and tend to lay low with dinner and a glass of wine with my husband. Even a busy day at work is now awful for me. Answers would be good one way or another.
I agree with Befuddled (who seems quite unfuddled to me).
Yes, an MS diagnosis relies heavily on MRI scans and demyelinating lesions. Without evidence of such lesions within the CNS, MS cannot be diagnosed, irrespective of symptoms.
One of the problems is that MS does share a lot of symptoms with other diagnoses, so saying ‘I have all the symptoms’ doesn’t mean you have MS. Have you had your vitamin D and B12 levels checked? Thyroid tested? What about Lyme Disease? Fibromyalgia, ME, CFS, the list goes on and on. Ultimately it could be that you are diagnosed with Functional Neurological Disorder (FND). Some of these diagnoses may seem like a cop out, when you’ve been convinced it’s MS for a long time, but truly, the sooner you get a diagnosis of something, the better off you will be.
I do understand, 6 years with symptoms must be so difficult to live with. But if you’ve had MRI scans and they are clear, then it’s not MS.
Sue