I do think there is a lot of misinformation about MS to be honest. The trouble is too Googleitis doesnt differentiate between the good stuff and the rubbish, so people are being misinformed not because they want to be but because Google is just a database like a library actually and it goes off and finds stuff beginning with the letters MS, and comes backs with books and literature full of articles about it, but unless you actually know what you are reading about your brain will simply overload on all sorts of stuff 98per cent of it being rubbish.
The other big problem too is, NEUROLOGISTS. Oh yes dare i say it.
So many of them have their own ideas about MS and other diseases. Until they all get on the same page we are doommmmeeeddddddddd lol.
I think MS is like any other long term chronic illness it isnt a special illness it is MS. My Grandfather had Parkinsons and he suffered terribly in those days even worse then now as they still put Parkinsons under Functional Neurological Disorder, and hey some people with MS get FND to even now, and some neurologists called Parkinsons a functional neurological disorder too.
Lupus is a long term chronic illness and my father ultimately paid the price to it, as his kidneys weakened he got septicaemia after a routine operation and i sadly lost him at 75 years old, and this is the guy who fought in the war. Every day for years it was agony to walk, actually looking back on it, he had all the MS symptoms too but he never gave up.
Diabetes is the pits, and causes so many horrible things omg I know people who are blind and some have lost feet with it.
What disease am I describing?
Common symptoms at the time of diagnosis are fatigue, problems with eyesight, stumbling or numbness, pins and needles, burning sensations.
MS you say?
Yes but also: ,M.E/FIBROMYALGIA/LUPUS/RA/LYMES …
The one thing with MS you rarely if ever die of the disease, you die with it. With proper medications, attitude, diet and mind set you can live with it and along side it for all your normal life span.
I think the biggest problem for people with MS…is the words … MS what it triggers in their brain…loss a big loss of their life, and doom…
I have never thought that way personally. I have had many horrible things happen to me medically wise, and am even now struggling with maybe a new diagnosis of TEA. Not tea for two lol but Transient Epileptic Amnesia. Hey ho only I should be given another rare disease to cope with lol…now what did i do in my last life to warrant that he he.
MS is challenging of course it is, and it is scary, but now there are so many new things coming on the market and loads more research happening. I know of many young people now with MS, at university and planning for their FUTURE. Thats what we have to do, carry on planning for our future with MS and dealing with its fall out every now and then as best we can.
I also think we have to learn ourselves how it effects US. Not someone elses MS, as everyones MS is different. What might work for A, might be the worse thing for B.
A, finds the cold makes spasms worse, so sits by fire or has hot baths.
B, finds the heat makes the spasms worse so sits outside in the cold lol…
Learn about your own MS, not someone else’s. Challenge it. Make friends with it. Give it what it wants. If you find that going gluten free makes it happier, then go gluten free. Lots of MS simply hates alcohol and fags, so if you do both, be warned about the consequences lol…as it will surely bite you in the bum literally with some nice stinging paresthesia lol…
Yep learn about your MS, what it likes and what it dislikes, keep a diary. I did to start with and now i am comfortable with mine as I know what it wants of me. If i go over that line i get a little reminder lol…
I am 63 and i enjoy my life. My sister is 68 and in the last 18 months has sadly had to loose both breasts to cancer in two major ops. In a large family all are survivors (my mum is 92 and she has sisters similar age), only one other person had breast cancer a MALE our uncle in Italy.
What were the chances my sister would get breast cancer? She neither smokes and rarely drinks, goes to gym and eats healthy she still works. Life throws so many curb balls at us, whilst we are worrying about our own illness, others are also suffering and adapting too.
Nah I have MS but do you know what? I would rather have MS then have to face what she has to face right now.
At least I know where my body is taking me, right now she hasnt got a clue.
So lets stop stressing over MS and live with it, and help to research it, and keep active, and live our lives the best we know how, there are no guarantees in this life, and I for one am not giving up because life is tough right now, if that was the case I would have given up many years ago…but i didnt and I was blessed to see many more things. I love life as it is, MS and all it throws at me, as i wake up in the morning, and see the sky, and hear the birds, and look at my hubbys face, i know I am at peace with myself and still have a lot of living to get through lol…
I might have MS, but MS doesn’t own me, I allow it to stay yeh it bites my butt now and then, but then I bite back because i wont let it win…
Coping with MS is a mindset…xxxxxxxxx