reaching wits end!

Hi all,

This is my first post so I’ll try and keep it logical! Why i’m feeling the need to post is that I have now been diagnosed with relapsing and remitting MS after 20 months of difficulties. I had some initial steroid treatment the day after diagnosis, and although this eased the symptoms over a 3 wk period, they then returned worse than ever, and I am now in my 9th week of them with no sign of things getting easier.Symptoms include: freezing feet, pins and needles in the feet, feeling that feet are bound, weakness in ankles, numbness of the pelvic area (causing toilet difficulties) and the feeling of wearing the tightest pair of hotpants ever! Balance is unpredictable, carrying of hot objects dodgy and some slight stuttering.

Everything seems to take so long! the MS nurse is arranging me to start Betaferon on the 13 June, but in the meantime i’m struggling to cope with the situation as it is. I have an appointment with a new GP on 4th June, and I’m wondering where I should start with asking for help? Medication to help symptoms? What can I do to help myself?

My situation is I’m self employed dance teacher, so going to work has not been possible (financially difficult) I’m the only driver in the family and a carer for my husband.

Practical advice and would be sooo gratefully received!

Hello and welcome to the site :slight_smile:

Getting a diagnosis is one hell of a thing to get our head round, but the added complications of being self employed, a dance teacher and a carer is going to complicate things even more :frowning: The one thing that I can tell you is that in RRMS that we get remissions after relapses, albeit often imperfect ones, so if you hang in there, you will hopefully notice a difference soon.

In the meantime, I think you should be asking your GP for help with your sensory symptoms (a neuropathic painkiller like amitriptyline, pregabalin or gabapentin should make a major difference once you get on the right med and the right dose, but don’t be tempted to rush the dose - build it slowly to avoid side effects). Your GP can also refer you to neurophysio for help with your balance. If you’re the kind of dance teacher that demonstrates to the older students, I’m betting that your core muscles are pretty solid - this will be a big advantage. The neurophysio will help you to teach your body which way’s up again.

As far as work goes, if you have your own school, could you get the older students involved in teaching? You can direct things from a corner?

What you can do to help yourself is fairly limited :frowning: Lots of rest is important when we’re having a relapse. A healthy diet and not smoking are good for the long-term; regular exercise without exhausting ourselves or getting too hot or dehydrated helps too. Taking a vitamin D supplement is also widely recommended for MS now - most neuros recommend 4-5,000iu a day. (You can buy Healthy Origins 5,000iu capsules quite reasonably on-line, but do shop around for brands & sources as the price varies a lot.)

The other thing that I recommend you do is phone Social Services. If you are finding it difficult to care for your husband, never mind yourself, then they are the people who should be stepping in to help. You could also look at what benefits might be available to you, if work is impossible just now. The DWP do an on-line “benefits checker” you could use to see what you might qualify for. Get some help with any forms you fill in - they are full of invisible tripwires!

With any luck you’ll find life a lot easier once you get the right neuropathic painkiller. Some GPs do not like to prescribe meds without authorisation from a neuro or MS nurse though so it may be quicker if you phone your nurse to ask about meds before your GP appointment. If you can then tell the GP that your MS nurse recommended that you try, e.g., pregabalin, you are less likely to encounter any problems.

Final couple of things: you should check through any paperwork you have that might have a critical illness clause (e.g. your mortgage) because MS is a payable condition and you need to tell the DVLA about your diagnosis (they typically put MSers on a three year renewable (for free) licence so they can keep tabs on us) and then tell your car insurance people what the DVLA decide (they can’t change your insurance premium).

I hope you start to notice a difference in your symptoms very soon.

Karen x

Hi, I’m new to this forum, but so glad of it, I have been living in limbo land for well over a yr, firstly I was diagnosed with fibro but then more and more symptoms keep coming. I am under a Nuro but he wasn’t convinced it was ms at start as I didn’t have enough spots on MRI to confirm. I am finding the fatigue so awful but I have been on a new drug for nearly a yr now and therefore I’m getting more good spells inbetween but when I take bad I take very bad. I always have aching legs in bed ESP at night. My gp has said in his opinion it def ms and I am under another dr who is a prof of general medicine and he says in his medical opinion It def ms too? What to do? I did take very bad in nov and Nuro seen me and put me on course of steriods and has said that everything adds up to ms but MRI doesn’t match yet and could take up to ten yrs to dx?? What to do??? So glad I’m not on my own anymore and that there is more of us out there going through same thing.

In what way doesn’t your MRI match? Are you seeing an MS specialist? Seems daft to be treating you as if it’s MS and not be doing any more investigation, but not name it :frowning:

I’m afraid your neuro sounds like he’s either a) a wimp or b) still wondering if it might be something else. I think, if I were you, I’d ask for a second opinion.

Karen x

Thank you for the great advice, I’ve started to put your suggestions into practice and feel brighter and much more positive today. Thanks again x