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Newly Diagnosed

Hello,

I’m Kate & I live on the south coast. After many tests, I was finally diagnosed with RRMS yesterday. I got to see my brain scan & all the white damage on the corona radiata. Thinking back I have had the symptoms for many years but always put them down to something else. It was only after coming back from my honeymoon last year & my left arm went completely numb & didn’t get better. My gp didn’t think it was anything other than a trapped nerve in my neck caused by carrying heavy suitcases. My partner is disabled herself & is wheelchair bound so I got all the heavy lifting. When my arm didn’t improve my gp sent me to see the neurologist & after many tests I am now here. I am in shock, how can I be disabled when I am my partner’s primary carer? What will happen next? I’m an artist & now my left eye has lost colour & saturation so I’m frustrated as well as shocked. Being sent to Southampton General to see the drug therapist, hopefully I will get the meds I need to at least control my MS, I don’t want to lose more sight or get any more numbness.

Thanks for letting me tell you about me, I’m sure I shall get more knowledgeable once I’ve let the diagnosis sink in & accept that my life will change somewhat. Am help or advise would be gratefully received

Kate.x

Hello Kate

It sounds like you are partly in shock because of your diagnosis, partly panicked by the symptoms which are affecting your sight and at least partly in a state of worry about caring for your partner.

What a lot you have to deal with.

I would suggest that you use the analogy of a plane crash (someone else used this earlier in the week so I’m pinching it!) You should make sure your own mask is fitted before trying to help someone else.

In your situation, you perhaps need to get your head around the MS diagnosis, do all you can to sort yourself out and start on a disease modifying drug (DMD) before starting to panic about caring for your partner.

Are you actually having a relapse at the moment? Is that why your eye has lost colour and saturation? Have you had any steroids prescribed for this? If not, see if you can get some. What you need is a high dose steroid called Prenisolone. The brand name is Medrol. Generally the dose is 500mg per day for 5 days. See https://www.mstrust.org.uk/a-z/steroids-methylprednisolone for more information. Your GP may not be familiar with the dose, see if you can get some advice from a local MS nurse is necessary - I assume you’ve been given the contact details of an MS nurse, if not, phone your neurologists secretary and ask for them.

You say you are seeing a drug therapist. This will presumably be to discuss DMDs. These are to reduce relapses and severity of relapses. Have a look at https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/decision-aid This will give you some idea of what DMDs are available. You won’t find that you are offered all of them, it will depend on your local prescribing centre as to what they offer and your MS may dictate what is suggested for you as well.

Once you have sorted out your current symptoms and have started a DMD to prevent further relapses, you may feel that you are in a much better place to start thinking about care for your partner.

There is no reason why you can’t have MS and continue to be able to take care of your partner.

Keep talking to us on this site, when you need empathy and advice, or simply a place to express your anger and frustration at being so unlucky as to get this sod of a disease. We’ll listen and commiserate or offer whatever advice we can.

Sue

Hi Kate,

I used to be an industrial artist and I understand that it’s alarming to find that your vision has changed. I have altered colour perception in my left eye, after optic neuritis, but the right eye seems to be unaffected.

You don’t need both eyes to assess colour hue and shade. Stereoscopic vision evolved for the purpose of judging perspective not colour. Although I no longer work in industry I quickly learned how to ignore my left eye and and use only the right for colour work.

If you test yourself with the Ishara Colour Plate Test you can see for yourself how well each eye is functioning. You can find it online at www.colour-blindness.com/colour-blindness-tests/ishihara-colour-test-plates.

I used an eye patch for a time while my brain was getting used to the messed up signals from the left eye. But it adapts pretty quickly and you can learn to ignore it.

Regards,

Anthony

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Thank you so much for taking the time to reply. I am very panicked about what will happen, my wife says that it will better once the MS nurse & drug therapy starts, limboland at present. Will study the info links you shared Sue, probably leave my nerdy wife to do the researching, give her something to do rather than feeling like a spare part

Hello am looking for help. Started suffering from weakness in my leg and it feeling numb and tingling in groin area. I have had a tremor for a while normally when holding things like my phone. I first thought I had a prolapsed disc but my physio said that all my reflexs feel very brisk and need an MRI. My leg just don’t feel like mine and I just feel exhausted. My son has a very rare undiagnosed neuro muscular disorder and is now in a wheelchair full time. Could this be linked? Feel so weak and I don’t think it’s my back as feels different than before. When lying I can only lift leg straight slightly then it shakes uncontrollable.pleasw help as I feel I’m going mad

I’ve answered your other post Smokey. Sue