Hey guys, just wondering if anyone could shed a light on a letter I received for me please?
I am still awaiting my MRI results for over a month now but I’ve received a letter saying my voltage gated potassium channel antibodies as part of my fasciculations syndrome investigation has come back negative - a mouthful I know but from what I gather that means muscle disease has been ruled out and I don’t have benign muscular fasciculations which is what my neurologist was suspecting I had which means the chances are whatever is causing my muscle weakness is neurological but I don’t know if this is the case because doctors letters are like code so I dont know if I’ve understood the letters properly?
There are some autoimmune conditions that produce those antibodies. A negative result just rules out those specific autoimmune conditions. Just one small piece in the jigsaw.
Thank you for taking the time to reply. It has cleared that up for me. My MRI results are ready, just waiting on them coming out but hopefully have them next week at some point so hopefully that will give me something to work with but it seems positive so far, in a sense. Just wish they would make the letters more easy to understand. I had to de-code my last letter by googling pretty much every sentence to figure out what most of the information was haha.
Have you got a follow up appointment with the neurologist, or is it all being done by follow up letters at this stage? Receiving letters written in medical jargon doesn’t make it easy! I guess running through your letters with your GP is the fall back position.
Hopefully it will turn out to be benign fasciculations.
Thanks again for your reply. I don’t have another appointment with the neurologist, that was just me getting results back from VGKC antibody test. Got a phone call today though saying my MRI results are in the post. I think the results from the VGCK means it isn’t benign fasciculations but I was expecting that because I have a lot more than just fasciculations. Everything points to neurological which I’ve suffered with for at least the past 15 years which is why I pushed for the MRI so in a strange way I sort of hope it is MS, as bad as it can be, it does seem the lesser of the evils and I’ve not prepared myself for it to be something else which probably isn’t the best thing but I do have/had every symptom on the checklist but hopefully all will become clear in the next few days!