I’ve posted a few times before but still searching for answers. I’ve been having neurological symptoms for 5 years now. My current symptoms are mainly leg spasticity, abnormal gait (my right leg won’t bend when walking), spasms, and hyperreflexia in both arms and legs. My symptoms tend to flare, recover some, and then worsen permanently, which feels more like a relapsing pattern. And these “attacks” or whatever they are always seem to happen after a bad virus like flu or covid, or during times of high stress or hormone fluctuations.
The problem is, my brain and spine MRIs (with/without contrast) have all been normal, as well as my EMG. My neurologist didn’t know what FND was at my first appointment (I mentioned that my sister has it and he asked me what it was), but after my normal MRI he is now saying that I have it even though I clearly have objective signs like spasticity and hyperreflexia. I have an appointment with an FND specialist in November, but the more research I’ve done the more I don’t think its FND.
I’m wondering if anyone here had a similar experience — normal MRIs for years, but still turned out to have MS or another autoimmune condition? How did you finally get diagnosed? Did you have to push for more testing, like a spinal tap? I’m feeling stuck and not sure whether to keep pushing for answers or accept the FND path.
It was suggested at my first ever neuro appointment that I may have FND.
I knew it wasn’t as I work in physiotherapy and as you have said, there is definitive physical symptoms, such as increased tone.
From my role at work I know when a symptom doesn’t comply with physiological function.
That was before Dx but I knew it wasn’t. MRI and LP later confirmed MS.
It’s a hard one as FND used to be written off as a mental health issue, unfortunately a lot of patients believe they have a disease when they don’t and it manifests as FND which makes it very difficult to manage expectations.
If you have objectively documented symptoms I would dig my heels in.
It may not be MS but a neurologist should know the difference between functional and physical symptoms.
That sounds rather disheartening and confusing. Even in a world in which an understanding of what FND is (and isn’t) has improved greatly, the taint of it being ‘all in your head’ still hangs around the diagnosis, even though it really shouldn’t. I’m sure you are heartily sorry that you gave the neurologist the idea!
All I can suggest is that you give things time. If there is a disease process like MS at work, it will reveal itself. Dr Time is always the best diagnostician. In the meantime, I don’t think there’s much for it but to see what the FND specialist has to say and try to be patient.
Thank you for the replies! I forgot to mention I also was doing physical therapy for awhile this past spring and my therapist was treating it like FND because that’s what my neurologist was leaning towards, and it actually made me so much worse she decided to stop therapy until I got more answers. She is the one who asked my neurologist to refer me to the FND specialist. I’m hoping that he will be open to looking into other possibilities before just jumping to FND.