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I Think MS Likes Me.....it keeps visiting!

Evening folks

Well, today I think the MS big bad monster decided to spend some time with me, just to remind me he is still there.

Since my dx a few weeks ago, all has been fairly stable with just intense burning in left leg and spasms - mind you that is seriously impacting on my sleep so still wish it would bugger off!

Turned over in bed last night and aaaaarghhhh excrutiating pain in left groin area where leg meets groin, which felt a bit like when I had symphysis pubis when pregnant. Lingered all day making stairs rather unpleasant.

Fast forward to 3 this afternoon where I was happily meandering around Morrisons contemplating the marked down cream cakes ( :slight_smile: ) I suddenly realised my left hip was aching a lot - then noticed I was kind of dragging my left leg and walking on outer edge of left foot. Staggered a few times but remained unscathed.

Drove off to Aldi on way home and was literally cockling over to the left whilst holding onto shelving as I went by. Loading onto conveyor and lurching around like one with a daytime drink problem!!

Drove v carefully home and rested leg, which seems a little better now.

How odd!!!

Is this a relapse? Should I tell my GP if it persists? I don’t yet have an MS Nurse as am ‘in the system’ awaiting 1st appt in Newly Diagnosed MS clinic.

I’ve been talking to this leg all night, telling it I have far too much to do tomorrow without all this nonsense!

Is this how MS gets you? Just out of nowhere??

And I swear if I don’t sleep tonight I will be Evil tomorrow and probably posting incoherent nonsense on forums like I was at half o clock this morning!

Hi Minnie Mouse,

this is from the MS Society website, a booklet called managing a relapse, I know about it because MS Nurse gave me this recently x

What is a relapse?
A relapse is the collection of symptoms that arise because
of new inflammation and demyelination in the brain and/or spinal cord.
A relapse can present itself in various forms. An example of a relapse could be blurred or no vision or not being able to lift a leg.
In order to be classed as a relapse, these symptoms would need to last for at least 24 hours, and not be caused by a fever or infection. They would also need to happen at least 30 days after any previous relapse.
A relapse may be called by other names, including an attack, exacerbation, flare-up, acute episode or clinical event.

Hope MS decides to dislike you real soon x

Sam x

Hi Minnie

You could see your GP in the absence of an MS nurse.

My feeling would be that this could be part of the original relapse, since you’ve had symptoms that centre on your left leg for a while. But it could be a new relapse, the problem is, which is it? MS is a git like that. And your GP probably won’t be able to figure that out.

If this was classed as a new relapse, you could get some high dose oral steroids to hasten the end of the relapse. They aren’t a cure, they are supposed to just shorten the time it takes for remission. And they a) don’t come with a guarantee (ie they don’t always work, b) are no use several weeks or more into the relapse, c) make you feel like crap, and d) you shouldn’t take them more that 2 or maximum 3 times in a year as overuse of steroids can give you osteoporosis in older age.

But, steroids wipe out your immune system (that’s the point, they reduce the inflammation) so before you take high dose steroids, you should always make sure you have your wee tested to ensure you don’t have a UTI because a UTI can give you symptoms of a relapse (bizarrely) and taking steroids when you have any kind of infection or virus is going to make the infection/virus a hundred times worse. I’ve had steroids with a common cold and it made that go bananas.

What your GP could do is give you a prescription for the symptoms you are experiencing all the time, the burning and spasms. For the burning type feeling (which counts as neuropathic pain), a drug called Amitriptyline is good, but you need to take that in the evening as it can make you dopey (so helps with sleep). But don’t take it later than about 8pm because it can givenyou a hangover type feeling the next day. For spasms, a drug called Baclofen is typically prescribed. But you should be careful in taking as low a dose as helps with the spasms because it can make your muscles weak (which is why it helps). You GP should be able to prescribe both, but one at a time, decide on which is the worst symptom and take that for several weeks at least so you know how it works, whether it does what you want it to, and if it gives you side effects.

Can you get bumped up the waiting list for the MS nurse? Get their take on what is happening to you, whether this is a new relapse or not, and what drugs you could/should be asking for? This is especially important if your GP is one of the many who don’t know too much about MS. Mine has basically learned from me what is wrong and knows when I ask for eg steroids that I am fully aware of what’s going on. And my MS nurse is the same. But I’ve had MS for over 20 years, not a few months.

Eventually, you will know what is your ‘new normal’, and what is not. You can still get a sudden kick in the pants by something unusual. That is the joy of MS!

Sue

Hi Sue, you really do a good job of keeping us all well informed. Well done x

Wow Sue , where do you have all this info stored!!!

Regarding whether or not it’s a relapse I’ve just logged it in my diary anyway, was much better this morning until I walked to Docs surgery and back, then I’ve been tripping and lurching all day!!

Not keen on more steroids to be honest as had some in July, so I’ll just keep an eye on it.

My sleep is dreadful at the moment, so I daresay tiredness is probably exacerbating things!

Got my parents to walk the dog today though as she’s not great on the lead, although fabulous off it. She has to be on lead thro the village until we get to the woods or canal. I didn’t fancy a fall in the middle of the village!

Thanks all for help/advice

Hi Minnie, I can relate to what you’re saying. I have been having tingling/a cool sensation in my right leg. mostly behind my knee cap & goes down my shin to my foot . I also find my self walking on the inside of my foot at times - and if I spot myself walking in a mirror when I get an ache in my leg, I’m limping .

It comes and goes . I too don’t know if its a relapse or not. I’m not on any meds - are you?

When I was pregnant , I had terrible sciatica pain and now 16 months later, it hasn’t gone away! I just started attending a Osteopath for that today