Last reply 3 months ago
Newly diagnosed and sitting in limbo

So I recently got diagnosed with MS in July this year. My MRI have shown no signs of active inflammation but there are lesions present in my brain and spine.

Took a course of 5-day steroids of Medrone and the side effects were horrible! Blurred vision, no appetite, tightness in jaw!

My symptoms are still present and I keep getting new symptoms like shin splints and numbness in hands and arms. I just feel like I’m in limbo with my diagnosis and don’t know what steps to take.

I have a meeting with my Neuro this week but it’s literally driving me crazy. My symptoms seem really minute compared to some forums that I’ve read. I don’t even know if I have had a relapse even though I’ve been suffering with my symptoms since March!

Add categories

Browse categories and add by clicking on them

You can remove current categories below by clicking the ‘x’.


stumbler
3 months ago

Hi @pbains17 and welcome.

Things seem to have moved very quickly for you and it’s time for you to sit down and take a deep breath. A diagnosis of MS means that you have to start learning about your body all over again.

As you have a meeting with your Neuro this week, you need to prepare yourself. Make a short, concise list of all the symptoms that you have been experiencing together with commencement date and duration (if you can recall). This will allow the Neuro to consider how best to treat your MS.

Also have a list of questions that you would like answering. This will help avoid you overlooking anything. It’s also recommended that you are accompanied to this appointment, by your partner or a family member – two pairs of ears are better than one!

In the meantime, you do need to try and calm yourself down. This in itself could be adding to your symptoms. Stress is a major antagoniser of MS. Otherwise, live healthily and eat healthily.

MS has an historic reputation of being a disabling condition. However, medical science has moved forwards in leaps and bounds over the last decade or so. There are now various treatment options available to keep the MS in check


grandma
3 months ago

Haven’t any experience of Medrone, it seems that most people on this site, but I could be wrong, are given Methylpredisolone for 3 days when they relapse. I have always had this (quite a few times in 25 years!) and have never had any side effects but any steroid treatment will calm down your present relapse and today’s drugs are very good at keeping the relapses at bay, which wasn’t the case 25.years ago when I was diagnosed because there were no dmt’s. So even though this sounds strange, you have ‘picked’ a good time to be diagnosed, ms Is no longer the life sentence it used to be, and when things have calmed down, you can take stock, and hopefully things will look a little rosier! You are at the start of a long journey, you have started with a hiccup, but hiccups stop, we get our breath back and carry on. Carry on, slowly and surely everything will unravel and you will have a better idea of what you’re facing for the next few years. Good luck😍


stumbler
3 months ago

Just for information, Medrone is another form of Methylprednisolone. 😉


grandma
3 months ago

Thanks Stumbler didn’t know that. As they say all information is power😍


vixen
3 months ago

Hello @pbains17, I recognise the trauma you are experiencing, I was in your position two years ago. I didn’t understand what is a relapse, what is normal, and to be honest, I still don’t understand fully. What matters most is that you take the time to absorb this diagnosis fully and carefully. Learn to take one day at a time, and be really nice to yourself. You won’t feel weird and wobbly about things for ever. Over time, your mind adapts to the new version of you and things will become more clearer and more comfortable. In the meantime, avoid Dr Google, rest and be with friends and loved ones as much as possible. Take good care of yourself, and try to exercise gently without overdoing things. You will be OK x


supersmileygal
3 months ago

There is some really good info if you Google newly-diagnosed and MS Trust.

However, I thought most important thing to do is work out what questions you have for your Neuro and ask them at your appointment. Talk about your concerns and next steps.

Do you have anyone to go in with you?
X


stumbler
3 months ago

@pbains17 , here’s a link to the information mentioned above by @supersmileygal . It’s all under the “Newly Diagnosed” tag :-

https://support.mstrust.org.uk/shop

Join Shift.ms to reply to this post.

Become part of the community so you can chat, compare and learn from other MSers.