This MS is just plain nasty
1 month since diagnosis after years of supposed migraines, 2 months since methylprednisolone....so much stress from universal credit basically calling me a liar and it all starts again....
Another 5 day course of methylprednisolone, still no contact returned from ms nurse or dmt information and this time its not just content with seriously limiting my ability to walk. It now wants to take the use of my hands from me as well, can't carry a hot drink in case I drop it again and any time I try to any of my hobbies my hands shake so much.
Try to write and it looks like a drunk spider just crawled out of an inkwell (if anyone is old enough to know what they are 🤣)...
This system is a joke.
Hands shake so much, that is tremors, in 2021 , I couldn’t even put a small meet in the oven, my hands will be shaking. Not be able to write, the only way you can avoid this,it will be reviewing the amount of carb you take. Because pain killers won’t help, and at some point it can get worse. I failed my exam in 2022 because of that, because during the exam I couldn’t write, I couldn’t be faster, I was very slow, my fingers were like a drunk spider. The part that hurts me the most is when I failed the exam.I wasn’t expecting my fingers to be like that during the exam. Also at that time my hability to memorize my courses even to understand them were slow. It was awful. The product that helped me is splina. Now for the finger, I decrease the carb that I eat completely. So for lunch I take salad or veggies soup. For supper I have tiny amounts of carbs and a lot of veggies, meat . Again I go with lean meat. Pork is not good, and red meat also doesn’t help. When I take pork I couldn’t even think , I have so much discomfort. When I take red med I have pins and needles. So I said bye to them. So the system is not a joke, it is real but you can bypass it. Find yourself the book called: healing Ms written by Ann borroch and read part 3. It tells you what to avoid when you have Ms and what to eat when you have Ms. But decrease the carb otherwise you won’t be able to hold a pencil in your hand. You can do this , you are strong 💪 !
i remember feeling ignored by my MS nurse, leaving so many messages and just not hearing back. luckily she retired and my new (younger) one is quite a fighter for me :-) I dont think UC was a thing when I was diagnosed so i just made do with PIP which was....a joke, seem to do better with snarky appeal letters, the only contact I've had with UC is one WCA which I was f*****g shattered when I attended and ended up with a splitting headache because of the lights in the office, god knows what I looked like but they didn't waste much of my time, hope you get them sorted :-) what DMT are you on? I was straight on tysabri which helped me a lot, think it brought the inflammation right down - went from one handed, one eyed, lhermitte's sign all over the place to 1.5 handed, 1.5 eyed, and lhermittes sign is just a hazy memory now. yeah, I'd agree with you, this MS is just plain nasty. 'Multiple F*****g Sclerosis' as a fellow infusion attendee used to call it.