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Awaiting Formal Diagnosis for SPMS

Hi All,

After experiencing many medical problems over at least 8 years, before which I lost some functionality in my left eye back in 1999, this week I was advised by a Neurologist that its highly likely I have Secondary Progressive MS.

He advised me that I will need some physiotherapy, and another MRI with possible lumbar puncture to confirm. So although not yet diagnosed formally, I was left in no doubt it is most likely just a case of ticking boxes to reach that diagnosis.

I’m normally the type of person who just shrugs and put things down to just getting old. This however has hit me like a ton of bricks. I’ve been reading all sorts of things since last Tuesday, most of which has just increased my concerns for the future. Unfortunately the majority of things I’ve read do not seem to have much in scientific details / clarity, nor from someone with MS themselves. Hence I find myself here, fighting to hold the tears back, watching my wife and son wrap Christmas presents in front of me.

I guess I am just hoping someone here can relate to how I feel, and perhaps offer some words of advise on the road ahead of me ?

J.

Hi J,

I have SPMS, and went through the RRMS stage over 25+ years. I am still here at 57yrs,

and looking forward to Christmas with my family.

I find the MS Trust a helpful place to go to for MS medical info. especially symptom management.

Following your tests, an MS Nurse will offer you symptom management and support.

Physio is a good idea and will help a lot. How is your bladder?? Balance? How far can you walk?

What do you find difficult in everyday life?

How are you at the moment? Any pains?

Symptoms:

https://www.mstrust.org.uk/about-ms/ms-symptoms/whats-causing-my-symptoms​​

Don’t let this very manageable disease ruin your Christmas.

Thanks for the reply and links, I have had a skim read of the first one already, and will be heading back to continue reading shortly.

In the meantime, My bladder is fine most of the time. My balance is terrible, tend to find myself “counter surfing” wherever possible with a hand touching a wall / chair, counter or similar. I tend to walk about 8000-14000 steps a day, I find it difficult to get started, but once into a rhythm can usually walk for 20 mins max before having to stop and rest my legs.

The main problem I seem to have is pain in the legs / lower back, and find it difficult to start moving my legs. Its almost as if I’ve lost the fine control for walking and standing. Once I’m actually moving I tend to walk in a wavy line and wobble a lot. I feel as if I am just kicking out my legs in front of me rather than actually placing my feet.

I have a lot of pains in my legs and back, which causes me difficulty in relaxing. Paracetamol seems to help a little, ibuprofen doesn’t seem to touch it. Both are just over the counter rather than prescribed by a healthcare skilled person. I think my main problem is I’m probably emotionally very low, which as a 49yr Male, is something I’ve always been told isn’t something I’m allowed to be.

I’m a very pragmatic person generally, and am intending to spend time enjoying the Christmas break. My wife has uncontrolled Epilepsy, and I think most of my concerns are about helping and managing things with her and my health moving forward.

Truth is, I feel I need to learn a lot very quickly to be able to cope moving forward. I’m sure I can do it, just a bit daunted and scared.

Best wishes to you and, thank you for replying. It really does mean a lot to me. Cest La Vie.

J.

1 Like

Hello J

It certainly is a most unsettling and scary time for you at the moment.

We on this forum don’t tend to agree that grown men aren’t allowed to be emotional. MS is as PJday said, a manageable disease. There are drugs to help with symptoms, neuropathic painkillers which may help with your legs and back. You might find that a muscle relaxant like Baclofen might help with the pain too, it’s possible that tension and spasticity are causing the pain (spasticity = excess tone, so relaxing the muscles would be difficult).

And physiotherapy will help too, with stretching the tight muscles and helping you to walk more effectively and using less energy.

Lots of people ‘furniture walk’ because their balance is poor. And wobbling and weaving when you walk might be helped by using a crutch to help you walk more easily.

Often people find that waiting for a diagnosis is worse than actually receiving said diagnosis. We tend to call it Limboland. It’s very unpleasant. I do hope you have your next round of tests soon and get the results in the not too distant future.

I spent about 18 years with a diagnosis of relapsing remitting MS, then 3 more with a diagnosis of SPMS. But now I’ve started having relapses again, so have the lovely title of Progressive Relapsing. Aka Active Progressive, aka Advanced MS. The titles seem to be a constantly changing picture. No one seems quite certain what to call anyone’s disease. Many of us just think that MS is a complete git, for coming uninvited into our lives and proceeding to do whatever the hell it likes.

Keep talking to us, we’ll do our best to help you manage the uncertainty of the next few weeks/months.

Best of luck.

Sue

Hi again J,

For pain: make an appointment with your GP and get amitriptyline as a treatment for your emotional lability and neuro-pain.

I, and many folk with MS take this in varying amounts. It will get rid of neuro-pain, reduce spasms and help with low mood/depression. (It may take a few weeks to get the full effect.)

For balance: it can help to focus on a fixed point ahead of you, keeping your chin up. This helps a bit.

I am sure the physio will show you how to do this.

How are you managing day to day?

Are you still working?

Do you have to walk far or drive a great distance?

On walking - it sounds like you need a walking aid or scooter/powerchair to help you get out and about.

These kind of everyday things can become difficult and make you feel depressed/stressed, there are solutions.

Thanks Sue, and PJDay for your kind words and support.

I received the letter from the hospital yesterday (christmas eve), and it states the diagnosis is SPMS, although the next MRI scan is to check to ensure there are no other causes identified for my symptoms. It goes on to say that if nothing else is discovered then it is MS. Furthermore they have referred me to a specialist Nurse now, along with the physiotherapy mentioned previously.

So, unless the MRI scan shows something else, I guess I’m joining the club, for want of a better lighthearted saying.

TBH, now that I’ve read the letter, I feel as if I can see a way forward, and now need to learn how to manage things a little better in the future. To that end, I’m very happy you both replied. Thank you.

However, it is Christmas Day, so I will wish you all seasonal greetings, and bid good night for now.

I will reply with more fully in the next few days, I’m trying to not think about it too much today, although breaking the news to parents & family is playing on my mind a bit.

Hope you two are both keeping well, and have enjoyed the day. Goodnight for today.

J.