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Struggling

Hi.

Newly signed up. Not sure if this is the correct place to post this or even if it’s appropriate, apologies in advance if it isn’t.

I was diagnosed in November, after a long, drawn out and complex process dating back 4 years. I had no symptoms, did a medical study in order to raise some funds to aid Christmas and they came back with ‘I have signs of demylineation’, I potentially have MS.

I made the mistake of reading up online. Biggest mistake ever and ever since then I’ve never been the same.

After being told by one neurologist I’m fine and not to worry, a couple of minor accidents, both falling over and hitting my head, I got referred back. After being sent to hospitals nowhere near me, being mucked around galore (long story) I went back to my local hospital and got given the diagnosis.

My problems are many fold, but I appreciate it’s minor compared to many. I just feel alone, cast adrift. Before the initial incident I was running 30 miles a week, now I can’t even contemplate running for a bus. I’ve gained weight, lost confidence, I’m doing silly things.

The symptoms I’m suffering from mainly are struggling to walk more than 10 minutes, bumping into things, numbness in my hands at night and general unsteadiness.

I just want to cope. Regain some degree of fitness. Not feel so isolated. No idea where to turn though.

Sorry

Hello

Of course this is the right place for your post. You sound so unhappy, you certainly do need some sunshine. What a way to find out you have MS.

Have you been told what variety of MS you have? You probably know this but there are two essential types, the Relapsing Remitting variety, which later can become Secondary Progressive or Progressive Relapsing (so RR/SP/PR), or Primary Progressive (PP).

People with the first variant tend to have relapses, aka flares; these are typically followed by at least partial remission, often total remission. But that can take some time. There are now a number of disease modifying drugs (DMDs) available to ward off the relapses, ranging from highly effective drugs (with the possibility of greater side effects) or less effective. Many people do ultimately become Progressive (usually after many years - it took about 19 years for me), this means they typically don’t have relapses, just a general slide further into grater disability. Some have the PR variant, where there is progression plus relapses (I’m a lucky bunny, falling into this category).

About 15% of people with MS have the Primary Progressive variant. This is often the most difficult to diagnose, so could take longer; some people are initially diagnosed as RR which is later changed to PP, until now there have been no DMDs available for PPMS. Recently though, a single (not ever so effective, and only available to a few people) drug has been given the OK to prescribe for PP, called Ocrevus. Better one than none of course, but it’s generally accepted that insufficient research is done into finding effective progression reducing drugs for this type of MS.

Have you been told about DMDs by your neurologist? And do you have an MS nurse? Believe me, a good MS nurse is worth at least 3 average neurologists. If you haven’t been told your MS type, or offered a DMD, then you probably should be. Try phoning your neurologists secretary to see how you can get an appointment to talk about both.

It certainly sounds as though you need some help. There are drugs which could help with symptom management, physiotherapy to help with maintaining some fitness. How I wish I’d known 15 years ago just how important a strong ‘core’ was. How I wish I’d known what that sentence even meant! Occupational therapy can help with aids and adaptations. All of this could be accessed from your MS nurse or neurologist. In my area (Coastal West Sussex), we have an excellent community neuro team. Other places have different ways of accessing therapies and help. There might be an MS Centre near to you which can offer treatments, exercise classes, just other people in the same leaky boat as you.

When you are randomly googling MS, be careful. We often say not to trust Dr Google, he is not a licensed neurologist. Instead, you can use the information on this site (see the About MS tab at the top), or the MS Trust (just type in a word to your browser that you want information on and MS Trust - there’s a wealth of excellent information). You can always ask us anything you want. Just remember, that we can only talk to you as fellow inhabitants of that boat, and using just our experience.

You’ll find that we are a friendly, quite inclusive group. I hope you’ve found some of this nonsense useful. (I tend to start writing and then just not stopping!)

I hope you find some sunshine soon.

Sue

Thank you for taking the time to reply.

i have primary progressive. Not got a MS nurse or indeed been really told about DMD’s. After the experience I’ve had with the medical profession these last 4 years, I’m pretty sick and tired of the whole process. I saw my neurologist last week and not got to go back for a year. I don’t help myself at times, I suppose it’s a bit of bravado, a bit of not wanting to be seen a burden, but I didn’t really go into depth in explaining how things are and how I feel and it’s affecting me.

My aims and desires seem a million miles away at the moment. I have no doubt I’m luckier than many people in that my symptoms aren’t too bad. I just feel a bit lost, isolated and lonely in regards to how to progress

and that is the problem - post diagnosis we don’t know how to progress because we are not in control of what happens to us, how things will develop. The things we took for granted are not necessarily available to us with 100% certainty any more (not easy to explain this !) I don’t think there’s a one size blueprint as to how we live with our m.s. I think all we can do is try and make the best of a bad job.

Hi, I think you would benefit from a talk with the MS help line. It is there to offer guidance, and they are lovely. They are there for giving the best advise. Good luck, Domestic goddess x

Hi well hello bringmesunshine…i love that sketch.

Bring me sunshine
In your smile
Bring me laughter
All the while
In this world where we live
There should be more happiness
So much joy you can give
To each brand new bright tomorrow

Make me happy
Through the years
Never bring me
Any tears
Let your arms be as warm
As the sun from up above
Bring me fun
Bring me sunshine
Bring me Love

Bring me sunshine
In your smile
Bring me laughter
All the while
In this world where we live
There should be more happiness
So much joy you can give
To each brand new bright tomorrow

Make me happy
Through the years
Never bring me
Any tears
Let your arms be as warm
As the sun from up above
Bring me fun
Bring me sunshine
Bring me Love, sweet love
Bring me fun
Bring me sunshine
Bring me Love
Hey!

OK you are depressed, and still in shock. You have had a life changing diagnosis. I believe (its my belief others have different ideas) that we go through a form of grieving.

You have not got to acceptance yet. Your kind of in shock.

I have PPMS and was diagnosed after 10 years just after my mum died.

You can have sunshine back in your life. Your new with a diagnosis. there is a new drug now out there for PPMS, and i think you should see your neurologist and talk about it.

Dont give up, get moving and fight this thing.

PPMS is slow progressive. So you can fight it and have a life.

Where are all your family and friends?

I have written about my journey with MS. It may bore some people to tears but i wrote it as it is.

two blogs may help you or not lol.

One is.

the other is.

You dont have to be alone, your not, not here anyway. If you need help or support just shout.

Dont give up, I havent and to be honest I had every excuse that I could have, but no beeping illness is going to get the better of me lol.

big hugs. today is a new day. xxxxx

Thank you so much

Thank you

Hello again

I’m sorry you’ve been diagnosed with PP. I think a PPMS diagnosis often leaves people feeling a bit adrift and powerless. Partly because it just seems that with no effective DMDs to halt progression, you are, as Krakowian, said out of control.

Crazy Chick wrote that PPMS is a slow progression. That is true I believe for most people. I really do hope you are one of those.

Meanwhile, even without DMDs, there are still things you can do to improve your current state of aloneness and inability to halt the slide.

If your balance is bad, you might find a walking aid a help. I know getting a stick or a crutch isn’t easy at first, but it does make life easier and safer. Then again, it does sound like you could do with a series of sessions with a neuro-physiotherapist. They could work out what your walking, figure out why you’re unsteady and maybe suggest solutions. They could also set you up with an exercise plan to get a bit fitter again.

You can still ask your neurologists secretary for the contact details of an MS nurse. That might make you feel a bit less left alone to get on with it by yourself. Equally, there may be groups and centres near to you where you could get to meet others with MS. Have a look at the tab at the top of this page headed Get Involved. Near the bottom of that page is a box where you can type in your postcode or town and find out if there are any services near to you.

You haven’t said whether you have a good family/friends support while you’re dealing with your diagnosis. I hope you do, if so, try talking to someone you trust and who cares about you about how you’re feeling. They might be able to help.

Meanwhile, keep talking to us.

Sue