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newbie ms advice

Everyday living
#1

hi folks.

im new to this so please be gentle with me!

been diagnosed with ms this august 2018 was a shock!

had a full spine mri which picked ms up on my neck

previous to this a neurologist said my walking problem and muscle weakness from my thigh to my foot left side which has got worse over the past 18 months was only functional and physio will sort me out!

he would not do any tests on me,but i kept pestering my g.p as i knew i was getting worse hence he referred me to a bone clinic for help who were super.

my question is i have to wait till 31st october to see a neurologist my walking never eases off its just forever there with pulling muscles it feels like from my backs of my knees up to my bum.

forever falling or tripping up over my big toe which i belive is called drop foot?

i understand there are so many types of ms i carnt work out what type i have?ive been told as some and go or affects other body parts im confused?! as my walking is slowly getting worse.

im also on esa on the wrag group as i thought i had sciatica drop foot and functional problems do i need to tell dwp my new problem and will they ask what type of ms i have?or should i wait until i see the neurologist in october for more proof?

thank you for reading

penny

#2

Hi Penny (nice avatar!)

Start out by looking up MS - use the About MS tab at the top of this pages. Or the MS Trust webpages. That will tell you some basics. Most people start out by being diagnosed with relapsing remitting MS in the first instance at least. In this group, you’ll find about 85% of people with MS, and the progressive variety wouldn’t normally be diagnosed for some time, ie when there’s been no remission periods.

The thing about drop foot, is that you can have relapsing remitting MS and still have a permanent problem with not being able to pick up your foot properly. Remission after a relapse can be partial, and foot drop is one of the worst culprits to stick around. There are various options you have to help pick your toes up, from orthotic devices to Functional Electrical Stimulation. When you see the neurologist, ask about help for these. (Ie referral.) Plus, remission can take weeks, months or so damn long you’ve got so used to the symptom you don’t notice it’s improved.

If you are diagnosed with RRMS, then you will hopefully be offered a Disease Modifying Drug (DMD). This will help to keep relapses at bay. And this will make you feel healthier and disability free for years to come. Have a look at https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid This will give you an idea of what drugs may be offered to you. It helps to have at least some familiarity with the names. You won’t have a completely free choice. Be led by your neurologist and your MS nurse (once you get one, and you could phone the neurologists secretary to ask for the contact details of yours - it would help to have a comforting expert view anyway).

It’s a big thing to be diagnosed with MS. Don’t expect to get comfortable with it overnight. Be prepared for a good amount of ‘why me?’ And ‘it’s not fair’. Then for some bloody fury at the alien that’s moved in on your life.

And feel free to come back here for help, support, answers and thoughts. I know it’s not a place you’d choose to be, but you are welcome.

Sue

#3

it could be spasticity causing you problems. spasticity is extremely common with ms. the neuro would say “high tone”. the muscles are continually contracted causing stiffness or tightness of the muscles. mine makes me feel like a member of the ministry of silly walks (old monty python) you need to learn how to stretch safely. physiotherapy is very effective, your ms nurse can refer you to neurological physios who understand ms. don’t try to understand it all at once. i’d wait until your appoiintment before telling the dwp. i used to always remember that old children’s story Chicken Licken. …“cocky Locky the sky is falling”… i saw a podiatrist in the neuro rehab unit. he tooks casts of my feet and made me some insoles to correct my walking. give youself time to absorb all of this, make a list of bullet points of things you want to discuss with the neuro. take someone with you who can prompt you if needed - after having all these questions flying around in your head, as soon as you get the chance you dry up and no words come out. this person can also act as another pair of ears and amke notes of what the neuro says. the different types of ms are RRMS (relapsing remmiting) which can eventually become secondary progressive; SP (secondary progressive) and PPMS (primary progressive). most people are diagnosed with RRMS. when you get the formal appointment to be given your diagnosis, you will probably be introduced to your ms nurse. then a dsicussion about DMD/DMTs (disease modifying drugs/treatments) the ms trust have a very useful factsheet about these. it’s a good idea to familiarise yourself with their names and method (tablet, injection, infusion) because you will be asked to choose. …and breathe. stay as calm as possible. i hope i’ve written clearly, sometimes i do and others i don’t. good luck penny xx

1 Like
#4

Thank you both for your kind words it’s a real help to know I’m not alone I’m taking my mom with me to all appointments from now on as like you quite rightfully say I will forget what I need to ask never mind tripping up at the same time

#5

If it’s available ask to see your local nuro physio, I saw one and it’s helped loads. She understands the physical effects of ms therefore can give you exsersizes that could help your symptoms. Some how it’s also great to feel you do have the ability to improve things, at least a little