Hi I’m Carol, got diagnosed in October 2025 with relapsing remitting ms, although I have had all the symptoms for the last 14 years in which I was diagnosed with fibromyalgia, I have suffered for the last 14 years, back and forth doctors with pain, fatigue, constant UTI’s, numbness, restless legs and all I got was it’s your fibromyalgia we will do some blood tests, I must have had every blood test under the sun over the years. Then in January 2025 I got a new strange numbness on the left side of my upper torso I left it a couple of days then went to the doctors, then everything went at 100mph, he referred me to neurology who booked me an mri scan, then saw neurologist for results, who booked further mri with contrast, then in October they gave me the diagnosis, I had 4 lesions on my brain 1 was still showing activity and 3 on my spine, I have since started Kesimpta injections but still feel rubbish, had a follow up appointment with neurologist last week who has ordered another mri as he thinks I’m still in a relapse. Sorry for the long rant but has this happened to anyone else
This might be total nonsense, but I do remember hearing a long time ago that disordered sensation, tingling, numbness etc in the limbs can be cause by a lot of things, but the same problem involving the torso is more likely to signal a CNS problem, and therefore better at attracting the doctor’s attention. As I say, I have no idea how much truth is in this, if any. For my own part, my first relapse did indeed involve body as well as legs, and it got their attention right away, certainly, but of course I don’t know what was exactly that triggered the GP’s well-placed suspicions.
I am sorry that you were left in the fibromyalgia wilderness for so long (and I don’t think you’re the only one on here by any means), and I’m sorry that you’ve got MS.
Like you, I lived for years with a mis-diagnosis and missed out on the correct medication / treatment. What I’ve learned is that getting the correct label doesn’t make you feel better! Life’s not fair, etc.
Hope they get to the bottom of it, sounds like you’re not fully resolved yet…
OK, I am absolutely no medic but is it possible that your are feeling ‘rubbish’ because of the Kesimpta? I’m not on Kesimpta but I understand it can take the body a while (few months) to get used to the drug?
Hank dogs is correct, I was on kesimpta for 11 months before changing DMT due to the side effects of getting an infection after every injection, worse mobility and psoriasis after every injection. It may well be your DMT that’s making matters worse and it’s worth a chat with your neurologist.
Hi I felt rubbish before starting Kesimpta, it suits some people but not others
Life isn’t fair, I know that getting the correct diagnosis doesn’t mean some miracle cure, but I lost my job through it with the correct diagnosis they would have worked with me
Hi thanks for your kind words and support