New, undiagnosed and spiralling (a little)

New diagnosis and before diagnosis
1

Hello all,

Having spent a few hours reviewing posts on this forum, which is very helpful and actually slightly addictive, i thought it would be better to post myself to see if anybody can help with my specific questions.

As a bit of context, i was diagnosed with CIS in 2015 following a patch of inflammation at T5 of my spinal cord. My brain scan was ‘on the borderlands’ of normal although the MRI report that i have subsequently obtained references 10 ‘non-specific’ lesions, which my neuro at the time put down to be general wear and tear. The way it was dealt with was a bit of a car crash really but i wont get into that.

Anyway, after 4 relatively symptom free years i had a noticeable increase in the pins and needles in my feet last September so was back on the merry go round of waiting for a neuro appointment, more scans etc. By the time i got my results i was fully recovered but when i was told that there were further lesions at T9 and T11 this sent me in to a bit of a spiral. The general numness (mild) and pins and needles returned in my feet almost immediately and i started to feel it in my little finger too (higher up than T5, which i presumed to mean further damage). Before covid, i was waiting for a lumbar puncture to confirm the diagnosis of MS although from what i have read, the diagnosis could have been made without it. The LP has been delayed but is now scheduled for a couple of weeks time, so things are moving forward at least.

Unfortunately, so are my symptoms. Around 4 weeks ago, the pins and needles started up again in my feet and little fingers. I contacted the MS nurse but the symptoms were mild at the time and so we decided that no action was best. However, over the last week i have been having muscle twitches in my calves (i’ve spent way too long watching them move randomly), a general tiredness in my legs (i wake up feeling like i have just been for a run) and a feeling that they are having to work harder just to stand still. It is actually easier to walk than stand in one place at the moment. Again, i have told the nurse but have been advised just to wait it out. My concern, and question is whether these spasms is something that generally subsides during remission like previous sensory symptoms or now that it is effecting my muscles, does it tend to persist?

I am currently on amitriptyline and have tried the magnesium spray as recommended on here. I have to say that although incredibly worrying it isn’t unbearable at this stage and i am still fully mobile so consider myself lucky in that respect. However, i am only 37 with 2 kids under 4 and it seems to be blow after blow at the moment so i am in a bit of a tailspin to be honest. I am trying to remain calm so any advice or words of encouragement would be very welcome! Sorry for the essay. I was trying to keep it brief!

Thank you and take care everyone

2

Hello

I suspect that having 2 children is making everything you are experiencing even worse. Just the fatigue that goes along with small children (especially in Lockdown!) is enough to make you super aware that your legs are just ‘not right’!!

I suspect that your MS nurse is right by suggesting that you try and ride out the symptoms. Supposing it is MS and this is a relapse, it sounds as though it’s more sensory than actually immobilising. The only treatment that can be given for an MS relapse is steroids. These can make you feel worse than the symptoms of a relapse and are notoriously unreliable.

The point of high dose steroids is to shorten the time it takes for an MS relapse to remit (ie completely or partially get better). But they are fairly unpleasant to take, giving you a horrible taste in your mouth, jitteryness, irritability, sleeplessness, and subsequently, a feeling of being ‘bruised’, like someone’s used you for a punchbag. This is likely to feel even worse as you have small children - so sleepless nights and general irritation will be doubled no doubt.

The other thing to know about steroids is that they work best when taken right at the very start of a relapse. So if your various symptoms have been going on for some weeks now, it’s probably better not to take steroids at this point. You could get little or no benefit from them. You should only take high dose steroids 2 or maximum 3 times in a year, so eke out the times you take them as they can lead to greater problems in the long term.

You could ask your GP for a prescription to help with the spasms. A drug like Baclofen is designed to relax tight muscles (spasticity) and jumpy muscles (spasms). You need to start with a very low dose (they come in 10mg tablets) as they can make your muscles feel weaker. Spasms can remit, just like other, more sensory symptoms. They can stay with you for a good long while, but very gradually improve. That’s the problem with MS relapses generally, they can take their own sweet time improving.

With regard to the Amitriptyline you are taking, you need to ensure you are taking it at the right time of day. If you take it too late at night (or too early in the day), it can give you a ‘hangover’ type feeling. The best time to take it is around 7 or 8pm. You could slightly increase the amount if you take it at the right time. This can help you to sleep better as well as help with the super annoying twitchy pins and needles feelings.

It’s a good thing that your LP is only a couple of weeks away. Hopefully you’ll get results quickly thereafter. You are right that diagnosis probably could have been made without it, but neurologists do like to get everything buttoned down. Once you’ve had it, hopefully it will be just a short time until you can start on a disease modifying drug (DMD) that will keep future relapses to a minimum. Meanwhile have a look at https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid

Best of luck.

Sue

3

Hi Sue,

Thank you for taking the time to respond to this message along with everybody else’s. I can see this forum being a bit of a godsend over the coming weeks / months as for me, the quest for answers and playing the waiting game has been one of the toughest parts. In my case, i feel like i have been ‘pushing’ the issue, paying for private scans and appointments when i was told that it would be 6-12 months for a referral to a neurologist and it has still taking me 5 years to get to this point. Maybe i should have left it alone as the stress of it all has certainly contributed to my most recent symptoms. I just couldn’t get my head around having to wait 12 months when i felt like i was under attack day after day. I know that this attitude is not going to help me now but i am still coming to terms with it all and haven’t quite got passed the angry at the world stage yet. I promise i will be more positive next time :slight_smile:

Thanks for the link on the DMD’s. I had been putting off doing the research until after my diagnosis is confirmed and the options are laid out for me. Can i ask though, will it be a case that i am just offered certain DMD’s to choose from i.e. the low category ones to start off. Or is it worth me putting up a fight for the more effective treatments?

Thanks again

4

Hello again

First of all, don’t be too quick to try to be ‘positive’. It’s perfectly acceptable to be furiously angry at the bloody bad luck. I don’t ever advise anyone to ‘accept’ their ill fortune. You’ll have your work cut out making sure your children don’t worry too much about you, putting on a brave face for them, so let your anger out when necessary!

With regard to DMDs, your choices may be slightly reduced in the short term due to Covid as hospitals are likely to prefer the less invasive, and certainly the drugs which are least likely to affect your immune system. So any advice I gave you right now would be total guesswork. Previously, I would always have suggested you weigh up benefits (relapse reduction) against costs (possible side effects) and take advice from your neurologist and MS nurse. My own feeling was always that going for the most effective drug available was the best idea.

Today, it will really be a case of what is possible. So it will doubtless be the case that you’ll be offered a limited choice.

Don’t prejudge the results but don’t get too despondent assuming you get the news you’re expecting. The chances are you’ll get on a decent drug, get over your current symptoms and still be fit and healthy in 10 years! By then there might even be a cure. (Likely? Probably not! Just hope.)

Sue