Hi,
I went to see my eye doctor for a hanging eye lid and in order to exclude things like a tumour I got an MRI. Good news was there wasn’t a tumour, but they found over 10 lesions in the white matter and signs of nerve inflammation and said this could well be MS. This was sent to a neurologist. I am shocked as this was just 2 days ago. Thinking after I’ve had tingling in my feet like for a couple of years but put it down to bad circulation and sitting too much and I haven’t had the energy to get it checked out. I wasn’t so worried. Now in hindsight this looks very different and I’m kicking myself for not getting it looked at before.
Recently I had also more numbness in one leg and my hand twitches now and then. Some cognitive blibs that I put down to stress and just life look a whole lot different now as well.
Having done some reading in how things have gone, and being 44 now I think PPMS would fit it all best. I have a son of 5, separated, live in a house with a stair. I am insanely worried how long I’ll be able to take care of him. I love to be active and had envisioned a retirement doing lots of hiking and being active. This seems to be off the cards now.
How did you land in your diagnosis?
Do you think I messed up by not seeking help earlier and ruined possible treatment windows?
I don’t have many people to talk to, unfortunately and I’m devastated…
I’d love to hear from you who have lived with this for a while!
Hi, welcome to the forum you probably didn’t want to be on…
I suppose there’s still a chance it may not be MS, but it’s understandable that you would feel devastated. That’s exactly the word I use, and my situation is quite similar to yours. And there’s nobody to talk to when you start trying to take this in. I’d say: keep up your active lifestyle while you can. Get outdoors, to help you cope.
I had an MRI scan done for head and other pains, “cancer excluded, but…” The results were unclear at first and I have spent several years having scans, before now having symptoms similar to yours. In my case they have also done a lumbar puncture (easy procedure to have) and my MS is now confirmed.
However, I have yet to see a neurologist and I feel things are moving incredibly slowly.
It’s also really hard to be left in limbo, with this devastating diagnosis, trying to take in how your life may change.
Like you, I am keen on hiking - I go on walking holidays, I also enjoy running. I intend to keep doing these things as long as I can, but I had expected them to be part of my retirement one day!
I don’t think you should blame yourself about the timing of seeking treatment. Pins and needles are incredibly common and there are more common causes than MS. Never mind about treatment windows. You need professional advice - perhaps you could private if you can afford to?
At any rate you do not know yet “how” your MS will turn out, and there seems to be a huge range. I’m trying to be optimistic on that front. I’m 45, and also concerned it might be PPMS, but even then, the prognosis is very varied…There is also a clinical trial for PPMS which is recruiting - we may have more treatment in the future. Things are moving on the research front.
Best of luck to you and I hope some more experienced people can answer.