sickness

I’m not new to MS as I was diagnosed around 3-4 years ago, but I have been exceptionally fortunate as after diagnosis I have only had altered sensation in my left leg (previously had O.N. and sensory relapses left leg). My specialist had also said he hoped that I wouldnt be too bad as I was quite old to be diagnosed (40). Therefore because of the minor symptoms I havent really paid any attention to my illness and thought that if this was the only thing I would have to put up with then I would be ok.

As of last week I have suffered a sensory relapse in my right leg which is far more sensitive than I have ever had before with the burning, aches and odd sensations. Getting a shower the water hurts and the sensation when drying my leg/foot makes me feel sicklier than I already feel. Does this mean my MS has worsened as its in a different part of my body that has never been effected before ?

I have a monthly appointment with the MS physio but she is unable to do anything other than give me exercises as its sensory, I I am not on any medication.

I guess I am asking should I now be on medication, my MS nurse has mentioned disease modifying treatment for the future, but not immediately - but is there anything else I could be taking in the meantime to help ?

Its strange as I suffered the ‘loss’ being diagnosed 3-4 years ago and got my head around it, but now as its in my right leg its affected me just as strong as the first time around (if that makes sense)

Thanks for reading my post and I’m sorry if I have ‘gone round the houses’ but my head is still very full of fairy dust !!!

Jane

Hi Jane, and welcome to the site

Sorry, but a relapse means new MS activity and, given that it is a new part of your body that’s been affected, you have a new lesion.

The criteria for disease modifying drugs (DMDs) include having at least two “clinically significant” relapses in two years so you wouldn’t satisfy that at the moment, but you should keep talking to your MS nurse and make sure that he/she is aware of any new symptoms you get so that, if things change, you can get onto a DMD without any hassle. They aren’t a cure, but they do help.

There are meds for sensory symptoms. These are known as neuropathic painkillers and include amitriptyline, gabapentin and pregabalin. Your GP can prescribe something for you, but may want direction from your MS nurse, so it’s usually best to talk to the nurse first. So, I recommend that you call the nurse, tell them about this relapse and ask for a meds recommendation. Then see your GP and tell him/her what the nurse recommended. MS nurses are horribly busy so you may have to call and leave messages several times before you finally get to speak to yours. Do keep trying! If you can’t wait, then see your GP anyway.

One thing that you can do to try and reduce future relapses is take a hefty vitamin D3 supplement - the link between D3 and MS is pretty conclusive now and there is growing research that taking a supplement reduces relapse rates. The most commonly recommended dose is 5,000iu a day. You will almost certainly have to buy these for yourself as the dose is way over the RDA and most GPs are not up to date with the latest research. You can get Healthy Origins vit D3 5,000iu capsules for a reasonable price on amazon, but it is worth shopping around for the best price as they do vary.

Btw, I understand exactly what you mean about this relapse being like the diagnosis all over again. I think we all feel a bit like this, even when we’ve had lots of relapses. The thing to hang onto is the fact that you recovered from previous attacks so there is no reason why you won’t recover from this one. Try and be patient, rest LOTS, and stay positive - one day at a time, and hopefully soon you’ll be getting better.

Karen x

Hi Karen

Thanks for taking time to reply to my post, I know I sound ignorant not being fully aware of the illness I have, but as my symptoms have been so mild I thought if I didnt know too much I wouldnt be too scared - stupid I know !

I have been to my doctors today asking for help but was told they couldnt do anything and told me to speak to my MS nurse - just as you have stated above.

I have also tried to get Vit D from my doctor and he refused advising that he could not prescribe it even though I had explained the information had come from the MS nurse - again just as you state above.

I work full time getting up at 6am and home at 6.30pm so its really difficult to rest, but I am trying to do nearly nothing over the weekends

Thanks again Karen - I really do appreciate your help and advice

Regards Jane x

No need to apologise for not knowing a lot / avoiding the topic till now - I think most people are exactly the same :slight_smile:

So, your next steps are to call your MS nurse (and keep trying until you speak to her/him) and for you to get some vitamin D3. A year’s supply of D3 only costs about £12 so it’s cheaper to get your own than get prescriptions anyway!

If you don’t have a contact number for your nurse, try calling your neuro’s secretary and asking him/her. They will have the number.

I’m not sure you should be working full-time with this going on - rest really is helpful for relapses. Are you aware that MS is automatically covered by The Equality Act? That means that your employer has to make “reasonable adjustments” to allow you to stay in work (e.g. working at home, new equipment that would make your life easier, changed hours, etc). There is also something in the Act about time off work for relapses not being classed as sick leave, but you’d need to check this bit as I’m not sure. However, I am sure there is something that can be done to get you through this relapse as quickly as possible (which working full time will not do!).

Karen x