Joined the MS club today

[bdb]

Well today it was confirmed. I have Relapsing Remitting. So im now a member of the 100,000 or so UK club.

Like a lot of folks the diagnosis was more just confirmation after a fair amount of time expecting it as the outcome.

I feel a wee bit of a fraud though - as my symptoms, while annoying and a bit uncomfortable at times, they seem less than what a lot of others are going through.

Things started for me (i now know) 15 years ago with what seems to be one of the classic symptoms - pins and needles in my hands. At the time i had an MRI and a few other tests and got referred to a physiotherapist for trapped/knotted nerve in my back.

It was nothing major and didn’t stop me doing anything. Physio didn’t help but i just got on with things. Over the years various symptoms which i can now link to MS occurred and i had other scans and tests but still nothing was ever confirmed.

Then in 2015 with a new symptom - numb buttocks this time - another scan and another specialist asks me if MS has ever been discussed. It hadn’t! He was obviously a little surprised as he let me know it had been noted by the GP in my notes right back at the beginning in 2002…

But back then things were different and to be honest i’ve been able to function pretty much as normal physically and mentally

Its been 2 years since then to reach today. A few more scans, a lumbar puncture and finally diagnosis. Next steps are to meet and discuss the drug therapy i have available to consider and that i guess is what will occupy my mind for a few weeks. Whether i will or won’t i am still undecided.

Then the other thing i am now having to consider - who do i tell? Is it important that anyone knows if its not affecting them directly?

Anyway i could go on…but for now…if you have read this far - thanks for taking the time

Strong and Positive thinking,

BDB

[Inactive_User]

Hi and welcome aboard!!

As rotten as it is to get a diagnosis of MS, it’s good to read it isn’t affecting you too badly.

And hopefully, if you get onto DMDs, it will keep attacks and disability at bay.

If it isn’t affecting you much, I don’t think you need to inform anyone.

However, it could be a wise thing check out insurance for a mortgage, if you have one, as some folk have had to make a claim should your condition make you unable to work in the future.

Can someone clarify this for both me and BDB. Can you take out mortgage insurance after a diagnosis of MS?

Pollsx

[Paolo_Smythe]

hello bdb. your situation sounds much like mine.

my choices were:

to get on a DMD ASAP, as i consider it an investment.

One might hope that a mild form of MS, or a more acutely conscious effort to avoid those things that provoke it, would be enough to allow us to enjoy a healthy and active life until our dying day… but you never know.

Drugs that can (on average) reduce the frequency of relapses and the progression of disability by half have to be worth a go i think, especially when the shopping list of side effects are mild, and in reality, rare to ever occur!

Those who know of my diagnosis are very few. And this remains the case until the MS demons manifest in a way which are too visible to hide or ignore.

My employer doesn’t know and will not know until my productivity is impacted.

My family doesn’t know, because what the hell are they gonna do about it anyway? And besides, they have suffered enough at the hands of this bugger disease already, due to it claiming my mother.

Ultimately, it is our cross to bear and no one, not even other MSers, can truly appreciate the set of symptoms we confront; it is such a personal disease!

The other thing to consider, is that there can be a lot of misinformation, ignorance and even prejudice against those with incurable and mentally degenerative diseases! So why add to the burden?

On the other side of the coin, are the generous and empathetic types, who give regularly and generously to causes such as The MS Society. If you are fortunate enough to have a mild form of the disease (at the moment) you mgiht be taken as being typical and people my divert their generosity elsewhere. (Just saying.)

Anyway i could go on…but for now…if you have read this far - thanks for taking the time

I am of the conviction that remaining positive in attitude and proactive in behaviour are the two most vital attributes one must have for living well with MS. I sense that you will be okay.

Good luck!

[Loublou]

Hello my lovely and welcome to this very loving family. It also took a long time for me to be diagnosed but what a relief. Take it step by step and don’t put more pressure on yourself by rushing things, take time to get your head around things.

You are completely in control of where you go from here. Medication is excellent these days and very effective. You have many choices to suit you. You should have a dedicated MS Nurse who will give you the options, don’t be overwhelmed and take your time to make a decision on the route you want to take. I’ve been on Copaxone daily injections for 6 years and it’s a breeze. It works too. Not saying it’s for you, there are so many options. There are oral tablets and so much more that are so effective so please don’t worry.

If you’re employed consider telling your employer. I was very open with mine from the beginning. Couldn’t really hide it as I shuffled in one day saying I was numb from the waste down. My boss recommended acupuncture, both they and I didn’t know what was happening to me. It was only after the MRI that I was diagnosed. They were and still are very understanding and that’s 6 years later.

If you disclose to your employer that you have MS you are protected by employment law. That means that if you have time off because of your illness it can’t be held against you.

There are other benefits too from disclosing your condition. I have been with my company for over 5 years so I have permanent health insurance. You may have the same. The benefit is that the insurance company will pay 2/3 salary of any shortfall for prolonged time off. For example I am going down to 4 days a week and they will pay 2/3 of my salary for the day I don’t work. If I was never to come back to work I would still get 2/3 my salary.

I wish you luck my lovely. If you have any questions please ask.

Louise xxx

[AngC]

You will need to advise the DVLA. If you drive that is. If you don’t, maybe not .