I was diagnosed in 2014 with MS (possibly progressive) at the time it was PPMS and still is always used crutches to walk since 2013 and my mobility got so bad after a uti no symptoms i ended up in hospital for 3 weeks then rehab which helped a little.
I have since then locked my legs, but struggling to get up off my bed and wheelchair, my physio retired and my neuro has left, waiting for replacement.
I have upper body strength but waist down none really had a pressure sore on my heel just healed after 3 months and a sore on my lower back not a pressure sore.
so i need help easing the stiff muscles and spasms my legs are always shaking and my walking is so bad due to spasticity and i am only 37 so quite young and feel so bad i can’t take my daughter out i don’yt drive, i would like to learn but have floaters thanks to ms so don’t think i can.
Try some mentholated helpers. Drink plenty of water or fruit juice & get some fresh air, as often as possible.
I had my driving licence detained for 3 years. The optic neuritis doesn’t stay forever, so don’t give up hope.
Stockings that help circulation could help with the walking & limb situation.
Changing to a healthier diet & all that boring stuff seems to help. Whatever works for you, only you know what your body requires.
3 years since my diagnosis of PPMS & if you listen to everyone, you’ll get even more confused. I’ve been told 10+ years I’ve had MS & even longer. After seeing people diagnosed 20 years ago, I scratch my head. Take control & things should be okay. Have a good day & treat yourself. Trust your instincts.
I’m getting a new bed like hospital ones thanks to ms sociality who helped with grant.
I didn’t much like look of swanks diet, i was diagnosed with uveitis in 2013 my neuro said last year no inflammation, he has left now waiting for a replacement.
Some days i do wish i was dead because i am so bad at the moment what is best exercises sat down i want to get better and i would like /hsct heard so much positives from this.
How long until my eye sight gets better ? been nearly 4 years i would like rid of this wheel chair i am too young and a daughter to look after.
what kind of mentholated helpers. do you think helped i did try magnesium oil so far no help.
I have secondary lymphodema so i use stockings too my circulation was checked and it was fine.
For the menthol types I use a Vicks inhaler, Vicks rub & breath in the steam. It clears my eyes & head. For the legs I use a large exercise ball. For hands a stress ball. Walnuts & vitamins B12+D3. I never stick to a full on diet. I just supplement until feeling better & try to gain muscle in the weak areas. Simple repetitive exercises with occasional weights added. Ankle weight types. Exfoliating problem areas. Cod liver oil, Omega 3 & Krill. Anything to boost the digestive & immune system.
Like yourself. We all seems to learn as much as we can. It’s all confusing. Information overload.
The plain answer is boost the health & give yourself a fighting chance.
The vapor helps with clearing the cloudy vision & floaters. It’s after the MS starts attacking the eyes nerves.
The problem that annoys me is the slurred speech & assumption I’m a drunk or paranoid. They don’t see what their ignorance causes. It results in people secluding themselves to avoid the dim & selfish.
I see a neurologist every 6 months for 5 minuets. Refusing medication every time.
Self healing & taking the pain. Instead of being turned into a cabbage.
Take anything as an opinion. You’ll find your way Marie.
Terry speaks sense. Try not to accept what you are now. There are many ways of making life better.
For me, the optic neuritis came on gradually and it made me too scared to drive. Believe it or not, when I was put on anti-depressants (citalopram) it made a remarkable recovery. My optometrist said it doesn’t work for everyone but it might be worth trying. My GP was agreeable to the medication in the first place as I was depressed and he said that most people with a chronic illness need some form of anti-depressant.
A new bed will make all the difference. I have started doing one day a week of physio at a local centre and it is beginning to have some impact on my legs. So in the past few months I’ve been given a bit more hope.
Hi Steve i am also on citalopram since a uti that got me in hospital back in 2015, had eye issues since 2013 no improvement so far i keep hoping ophthalmologist just said it will go on its own and discharged me but i was diagnosed with uveitis not even sure i have that just got floaters in my vision and now no neurologist he left and i was due to see him this month.
I take baclofen but it does nothing now doesnt ease stiffness or anything to spasms legs shake all time hands too betmiga does help my bladder abit but thats it pregablin helps my nerve pain but that is all i take.
I take that and tried tizanadine neither work and my neuro has left too so just gp and he won’t give me anything else said it is down to my neuro which i no longer have.
A Neurologist can’t cure the diagnosis of PPMS or any variation of MS. The best person to help anyone with MS is themselves.
That is a sad, but true fact unfortunately. There is no cure for any version MS. Personally I’ve been experimenting with diets, exercise & anything that helps in feeling better. Fresh air, sunlight & mixing with understanding people. Medication isn’t the be all. The body tells you what it needs.
I’ve tried some medications & I will try no more. Get outdoors & live.
I’m no expert. I’m just someone who is diagnosed with Primary Progressive Multiple Sclerosis. I’ve seen many of my MRi scans & seen the damage in my brain & spine. It’s not good. After falling out my wheelchair, braking a few bones & many toilet accidents. Watching life disappear. I’ve chosen to listen to myself & it’s working out far better.
After being told I will never drive again. I’m driving. After being advised on what services I can access, I do everything myself.
It hurts like hell, the world is spinning 24/7 & I forget stuff. I say snap out of it & drag yourselves kicking & screaming to what makes you tick. Fresh fruit, hydration, D3, B12, omega 3, hazel nuts, broccoli, salmon, mushrooms, Vicks, boiled eggs & doing what you enjoy. Avoiding the agenda driven fruit bats. A steady 18 degrees temperature & socialising with normal folk.
MS attracts vultures & parasites. Blank them & get on with it. You & your loved ones will be happy you did.
I do wish i could drive as your in a wheel chair too what kind of exercises are best to get kind of mobile and as i am young i do want to be active and not stuck in chair all time which was down to a uti that made me get worse in a short time disgnosed in 2014 so not had it long really.
Hello Marie I’m sorry I’m late in replying. It’s awful to see the steady decline I really feel for you. I’m a wheelchair user too, I’ve still not got the official diagnosis but steadly declining. I’m not allowed to drive either and that was the saddest thing for me. My cognitive ability is bad. I tried so hard to get function back but apart from some mobility in my home , wall walking, falling and crawling are the norm for me. The NHS have just given me a fantastic wheelchair and I’m about to get a WAV but although I’m grateful I feel unbelivably sad. I’m really struggling to keep cheerful …but Terry I love your last post it helped me as well as Marie. Don’t give up Marie the biggest thing we can alter is our outlook. I had CBT last year and it really helped. Take care Love and hugs Michelle and Frazer xx Sent from my phone
If you don’t want to be stuck in a wheelchair, make it happen. If you want to improve the muscle wastage, get some velcro leg weights & try walking as much as possible. Sticks, walker & taking deep breaths. Improve the circulation with stockings or sports sleeve supports. Using mentholated aids to open the air ways & get some oxygen in the blood. Fresh air is good.
Personally it seems to be heat related with me. Over excursion creates a higher body temperature & the body fats seem to set like lard. Hence why omega 3 oils & an olive oil diet with nuts & greens helps. Speaking to a nutritionist & doing a bit of research. Finding what foods & exercise that make you feel better.
Relax in the sun & absorb some natural vitamin D.
Oxtail soup for the vitamin B’s or mushrooms if your a vegetarian.
Now I’m getting hungry, talking about food. Garlic overdose to happen. It keeps the vampires away too.
Chin up Marie & push yourself. The falling makes you stronger.
Good message Terry although I don’t see myself as stuck in the wheelchair. With having children my pace of life was very fast before I became ill, I now see the wheelchair as my legs it is a good thing because it means that i can go all over the place my 15 year old daughter is Autistic and it means that we can go everywhere together also having Frazer my assistance dog means that i feel less vunerable in the chair and he looks after us both. I think the driving was my saddest loss. I did miss walking and running, my disability was rapid , I went from feeling very weak for a few months to the lot going , I couldn’t weight bear at all. I’ve managed to get some of it back but I couldn’t walk in an open space and I haven’t got the balance or strength for a rollator. I love your positive outlook Terry, i think it’s about never giving up but also recognising our limitations and acceptance can be a strength of we have a positive attitude. I’m still working on it …still having some down days but keep picking myself back up. Sorry for the blocked writing it’s sent from my phone. Michelle and Frazer xx
I understand your situation Michelle. An assistance dog & wheelchair are very good tools to get out with your daughter. I’m determined to keep using my limbs as much as possible. Like yourself, the PPMS diagnosis happened too quick & out the blue. Saying goodbye to ability too easily, is not going to happen with me. I’m still cheesed off at the failure to spot & the curtain twitcher know it alls. Let’s trade places I say. Anyone who thinks MS is easy, can take a sky dive, without a parachute. All I’ve been surrounded by since my diagnosis, is the thieving brain dead. They don’t know tough, just yet.
How do you stay active? my legs are so stiff and i want to get rid if i can or ease it?
I was alot better brfore a uti knocked me for 6 now i have lymphodema and been using crutches since before i was diagnosed and a wheelchair after i came out of rehab.
I am waiting to be referred for physio mine has retired and my neuro left so waiting for a replacement this forum is best for advice i want to be active i am only 37 and a 12 year old daughter i just need some advice really?
I don’t know you or your situation Marie. On the internet, anyone can pretend anything.
A lot of people claim to have problems & aren’t genuine.
My advice would be try & get to a swimming class with your daughter.
Buy a few big bunches of grapes & put some funky music on. It will raise the vibrations & make you feel better. If you need a friend, add me on here & message me.
Terry has PPMS & spend years of pulling myself out of the crap situation this problem causes.
i am my wifes carer she has progressive but as all of you say positive thinking is the best Allie we have
Marie are you taking anti depressants?? i know for many its another tablet but they do help to get you to a better place
my wife has in the last two years got worse but i do get her to exercise as best as she can ,she is in a chair but i found this is good for her and not a lot of money
Yeah been on citalapram since 2015 after admitted to hospital after a bad UTI, stiffness is my main issue that causes my balance to be unsafe too in 2014/15 i didn’t need a chair i want to get back to that.