Hi 👋🏻

Hi everyone, I’m newly diagnosed with MS although my neurologist says it’s mild if there is such a thing?
Waiting for a repeat MRI scan and a lumbar puncture to fully diagnose my MS and decide on a treatment plan.
Managing on strong pain killers just now :see_no_evil:
I have told immediate family although waiting for more information before telling my children aged between 22 & 7.
They will obviously have questions but I’m not sure I fully understand it myself.

Hi @Newbie2
Welcome to the forum.

I assume it’s Relapsing-Remitting you’ve been diagnosed with? Yes it can be ‘mild’, or rather in the remitting phase, less troublesome, but don’t be fooled that it will always be that way. It might, you could be lucky, but MS has a nasty habit of biting you in the posterior when you least expect it, so be prepared.

It’s good that you are already considering a treatment plan. You mention that you are waiting on an MRI and lumber puncture, so have you been given a definite MS diagnosis? I only ask because those 2 tests are usually what confirms it.

Have a good look around on the site, there is plenty of useful information here and a wealth of lived experience.

Hello

Personally I don’t believe in the designation ‘mild’ when it comes to MS.

Yes, your current and/or past symptoms may be mild, but no one, neurologist or otherwise, can tell you what the future holds (maybe a fortune teller??)

So, a repeat MRI scan and LP will perhaps be of most use for the neurologist to come to some conclusions about how ‘mild’, your MS really is. Or, as you say, to fully diagnose you. By which maybe the doctor means to formally designate your MS as relapsing remitting (by far the most common variety) or just possibly as progressive (less likely).

Have a look at MS Decisions aid | MS Trust This will give you a good indication of what disease modifying drugs (DMDs) you could be offered. The aim of most DMDs is to reduce the number and severity of relapses.

Also, there’s a page by the MS Trust on how to talk to other people about your diagnosis, including your children: Telling people | MS Trust

Best of luck

Sue

Thank you Sue,
I have had a look and ordered literature for my children 7 & 14 to help them understand when I do tell them.
For now they know I have a bad leg some days and can’t do everything with them like I used to.

Yes, I had an MRI scan in August and my neurologist wants to repeat this as well as a lumbar puncture.
I have had a constant weakness in my right leg since lockdown 2020, walking for any length of time results in my leg dragging & foot drop.
Have a few good days but it’s pretty much daily re the walking difficulty.
My right arm isn’t as bad but when it is flaring up I lose dexterity in my hand.

Yes that makes sense @Newbie2. I’d had several MRI’s, a VEP and LP before I finally received the dx of RRMS.

If you’ve only been having the tests and a dx since August, I have to say your Neuro is working with some speed…which is good for you of course! I had a gap of over a decade between symptoms beginning and a final dx. So a few months, you’re doing well to have got this far. I know it probably doesn’t feel like a bonus but honestly, an early dx and treatment plan and getting you started on DMD’s is the way to go.

Read up as much as you can (from reliable official places such as this one), keep a log of your symptoms, when they started, how long they last, how they’ve affected you. That will be useful info for the Neuro appointments when you have them, and as a memory aid for you.

Let us know how you get on. :slightly_smiling_face:

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Hello again Newbie

With regard to foot drop, there are a number of things you can do to help it. Unfortunately, once the perennial nerve (which is the nerve which runs from the knee to the foot and signals your toes to pick up - or not) is beggared (to use a polite euphemism), it rarely if ever, improves.

You could get a referral from your neurologist or GP to the local Orthotics department who could sort you out with an orthotic device (a bit old fashioned, but an ‘Ankle Foot Orthotic’ or AFO works well for many people). Or your local neurological physiotherapy department could get you an https://www.ossur.com/en-gb/bracing-and-supports/foot-and-ankle/foot-up or a Boxia™ Drop Foot AFO - Free Standard UK Delivery - Orthotix UK Alternatively, they are both available to buy from the site that has the same name as a South American river (no advertising here!) or from other sites.

Both Foot-up and Boxia work on similar bases, they use elastic attached to your shoe and help pick up your foot. Very basic technology, but cheap and effective.

Best still though is Functional Electrical Stimulation (FES). Most local NHS services will support paying for FES, although some don’t - where I live (the CCG is Coastal West Sussex), they will not pay for FES for people with MS. It’s annoying, they get around the rule that says a blanket policy isn’t allowed by saying each case must be ‘exceptional’. MS can’t be exceptional because we are all different, thus all are exceptional = no one is exceptional!!

FES is a device whereby stimulation electrodes are attached to the skin below the knee corresponding to the Perennial nerve spot. A wire (or wireless signal), goes to a receiver in your shoe and thus the foot is stimulated to pick up. FES works brilliantly for most people with MS caused foot drop. So if you can get a referral (from your GP, often after a test conducted by your physiotherapist), it’s definitely worth a go.

Foot drop is annoying. It causes many people to cause damage to their musculature because they throw their foot out in odd directions (the ‘penguin walk’ is typical or hitching your hip as you throw your foot out to the side). Yet, there are a number of simple and not so simple remedies.

Having foot drop corrected will help immensely with your walking.

Sue

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Thank you again :blush:
This information would have taken a lot of research to find out myself!
I am guilty of the ‘penguin walk’ especially walking upstairs, no end of entertainment for my partner :rofl:

Thank you @Willowtree.

Many years of MS has taught me quite a lot. I have used every one of the above aids to foot drop over years. Sadly I’ve not been able to walk at all for 2 years after a fall when I broke my femur! Prior to that I used a wheelchair plus could walk a bit with a walker and something to help pick up my recalcitrant right foot.

My knowledge is useless to me now, but it’s lovely to be able to assist others.

Sue

@Ssssue, I’m sorry to hear that.

Don’t worry, I’m accustomed to my particular level of decrepitude! It’s 25 years in a few weeks since MS came bursting into my life uninvited on my 30th birthday. (A gift from a very bad fairy!)

My disability, despite having had the relapsing remitting version of MS, is the reason why the newly diagnosed (in my opinion) should get on a good, effective disease modifying drug as soon as possible.

In my case, for the first 5 years there were no DMDs. Then the drugs weren’t massively effective. Added to which, I’ve had bad side effects from all 4 of the DMDs I’ve had over the years. So basically, I’ve had no benefit from disease modifying drugs.

For the first 8 or so years, my MS could have been described as ‘mild’, even outwith DMDs. I used to tell people ‘I have MS, but I’m relatively lucky, I’m not disabled!!’ I haven’t said that since 2012 when I had the mother of all relapses (MOAR! - I was basically paralysed from chest down and spent 3 months in hospital/rehab). I had a lot of remission from that relapse but was a wheelchair user about 90% of the time from then on. I stopped describing myself as even relatively ‘lucky’!

So my experience shows that while the beginning of my MS was quite gentle, within 15 years I was properly disabled.

Disease modifying drugs are necessary. Today there are much better drugs available and there are more being developed all the time.

Sue

Wowserz, that’s an eye opener if I ever read one :confused:
My neurologist did mention that treatment for MS has come on a lot in the last 5 years or so, hopefully he finds something for me that works (& agrees with me) :crossed_fingers:
I made it to my 38th birthday before symptoms became daily (prior to that I put it down to the heels I was wearing or tripping on something)
This hasn’t been by year, diagnosed with hyper mobility syndrome & MS within months of each other :woman_facepalming: although I’m thinking the joint pain could be MS related rather than hyper mobility with hindsight although physio is helping.
Anyhoo, thank you again.
You’re really helping me to understand this diseasea & what can be done. :blush:

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So my neurologist called on Tuesday with a diagnosis of RRMS.
Next step for me is blood tests then dmd.
I’ve got an appointment with my ms nurse in April to discuss the options available to me although I can’t remember the name of the drugs mentioned the nurses are sending out info.

Thankyou so much for such detailed information. I am new here. Its my first post. Your message is really helpful for me.

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You’re welcome :relaxed:
Welcome to the group, lots of useful advice on here & lots of lovely people to chat with.