Hello everyone

Just popped in to say hello and to introduce myself…

My name is Kev Adams (surprise surprise!) I’m 59, and from Castlethorpe, near Milton Keynes.

In 2010 I was diagnosed with non-Hodgkins lymphoma and spent that year doing chemo and eventually beating the cancer. Resolving to spend 2011 recovering and rebuilding my strength I did quite well for a while but found walking difficult and gradually lost balance, ending up having to get a wheelchair.

The medicoes had already discovered a swelling in my spinal column. My haematologist could not be convinced that it was a side effect of the lymphoma, since he had never seen such an outcome before, but the neurologists spent a long time basing all their assumptions on the cancer/chemo as a cause.

Last year I started to relapse badly in the summer, I could no longer use a frame and transfers were becoming harder. Finally in December I ended up in hospital after a blackout and a fall from a screwed-up transfer at the top of our stairs. While I was in hospital the neuros finally got round to giving me the once over properly, and concluded that I had primary progressive MS. Nothing to do wit the cancer, just another dose of bad luck. Hmmm.

I found the cancer easier to face up to- there were simply two outcomes, and I was told that the happy one should see me back to leading a normal life. I set my heart on that. Now I feel I am being kicked in the teeth for my presumption, every day, every hour almost.

I am finding this emotionally almost impossible to deal with.I have withdrawn into myself, the fatigue precludes doing any of the things I used to do, in particular playing music. (I was a semi-pro). Fortunately my wife is wonderfully supportive and understanding. ‘In sickness and in health’!

Anyway that’s enough sob story. I’ve come on here for fellowship and advice, and to lose the feeling of being on my own in my suffering. I’m looking forward to meeting you all.

Hi Kev, I’m so sorry you’ve had such an awful time, You’ve come to the right place for friendship and support, we really do all know just how you’re feeling. It can be so hard to deal with but on here you’ll find lots of people to welcome you and ensure you’re not alone. Have you spoken to your GP or MS nurse about it? Many of us on here are prescribed anti depressants…there’s no shame in taking them, they can help enormously. Once you’ve grieved for the things you’ve lost and can no longer do…you’ll will, hopefully, come to accept that life with MS is bearable, although very different. Acceptance and learning to live in the present moment are the things that helped me learn to cope. In the meantime our little group will be here to support you when you need to moan , rant or just ask for advice… My very best wishes, Nina

Hi Kev,

I had hodgkins lymphoma in 1990 when I was 25 (now 49). I had chemo and radiation treatment. In 1991 I started to get pins and needles and l’hermittes (tingle when moving the neck down). I had MRI, LP etc which were clear and I was told it was a side effect of the treatment). It went away and I was fine apart from tiredness until 2005 when I got numbness in arms. Saw a neuro and had MRI which was clear. Then in 2008 I had an attack of more numbness, left sided weakness and exhaustion etc. Didnt see neuro but was on the mend after a few weeks. Then in 2010 started to notice spastic foot drop. Saw a neuro in 2011, lesion seen on mri (neck) and the neuro said I had delayed radiation myelopathy from 1990. In 2012 I saw a different neuro with a different view. He reckoned I had MS and had so since 1991. But after a clear LP he couldnt diagnose anything. So basically I am still in limbo - I just dont think anyone knows.

In your case have you had lesions found on your brain MRI and have you had a lumbar puncture?

Take Care Moyna xxx

Hi Kev and welcome to our little gang! Well it’s not a gang you would have chosen to be in… but you couldn’t have found a better place to begin accepting and living with your PPMS. It is one hell of a thing to get your head round… really a bit of an emotional rollercoaster. You might find this hard to believe, but it does get easier. Over six years after diagnosis I still have those OMG I HAVE PPMS moments… but not so often now… in fact when I think about it, hardly at all. You need to remember that this is NOT a terminal illness, that progression for many of us can be very slow, or that progression can slow down and sometimes stop altogether. And you will get to know your own MS… you will not get all the symptoms you have read about and then you might get some that you haven’t even realised were due to your MS. Anyway, a huge welcome to you… come on here and discuss anything, laugh, cry, rant… we are all here for you. Probably the very best thing about coming on here is to realise you are not alone with your fears, your frustrations or your weird symptoms. Great to hear your wife is so supportive. Makes a big difference. Looking forward to seeing you on here regularly, Have a good Sunday, Pat xx

Hi Kev

Welcome to our ‘gang’ where you find loads of help and support, and where you can have a moan and be understood.

Dont beat yourself up Kev, ppms is really hard to get your head around, but hang in there, acceptance does happen, and it gets easier, hard to believe when you are low, but just take one day at a time, as it is sort if a beverement.

Glad you have a supportive family, and glad that you have joined the group, take care.

Pam x

Hi Kev

Welcome to our ‘gang’ where you find loads of help and support, and where you can have a moan and be understood.

Dont beat yourself up Kev, ppms is really hard to get your head around, but hang in there, acceptance does happen, and it gets easier, hard to believe when you are low, but just take one day at a time, as it is sort if a beverement.

Glad you have a supportive family, and glad that you have joined the group, take care.

Pam x

Hi Nina, thanks. Yes, I have talked with the GP but I have said that for now I’d prefer to stay off anti-depressants, seeing as I’m filling myself with enough chemicals anyway (only gabapentin and baclafen for ms, but several other things that men of my age seem to need for heart and prostate, plus sodium and vit D supplememts.)

I’m relying on this coming to terms thing. After all, though my diagnosis is recent I have been increasingly disabled for three years now, so I hope I’m well on the road to dealing with it.

Moyna- interesting similarities in what you say to my case. I did notice some areas of numbness and skin burning, quite a while before my lymphoma diagnosis. (Strangely, in my arms and on my torso, whereas now it is nearly all in my legs .

MRI scans have not shown any lesions in my brain, which is perhaps what has confued the neuro’s for a while, but a lumbar puncture shows the right protein indicators for MS. I did have a lumbar puncture in 2010 and they didn’t pick anything up then, though they were really looking to see if the lymphoma had crossed the blood-brain barrier (thankfully not). MRIs back then picked up the swelling in the spinal chord (T4 -5) and they labelled it ‘paraneoplastic myelopathy’ which I think translates as a ‘non malignant something or other on the spine’ :slight_smile:

Snow Leopard- thanks for the welcome. I’m looking forward to dropping in regularly.

Love, Kev

Hi Pam! You must have posted while I was concocting my last extended essay! Thanks ever so much for the welcome.

Hi Kev and welcome,

It’s difficult to accept in so many ways, so I can understand your feelings having a shift in expectatons. I find I can shuffle thru moods several times a day and I don’t think I’m having mood swings, there’s just so much uncertainty and it’s hard when you can’t rely on your own body all of a sudden! I taught pole dance classes at a gym, til literally a few weeks before I was diagnosed. I miss that so bad that there is still a pole in our dining room, I just can’t lift my weight anymore. But I feel like I’m going to have to wear black on the day I take it down.

The emotional side is hard, I take the amitriptyline to help me sleep and I’m thankful for that (as lack of sleep is a sure way for me to get depressed).

Take care

Sonia x

Hi Sonia

I know exactly what you mean about not being able to do all those things you once did. I have a small workshop at the back of the house where I used to do violin repairs. I had it refitted so I could use it in my wheelchair; I was able to do that for about another year until I had to face up to not accepting any more work. Now I have to look at it every time I’m wheeled out of the house by the back door.

As for the room full of guitars- they stare at me accusingly- ‘you never play us any more!’.

Hi Kev and welcome.

MS can be so frustrating I have given in gradually relinquishing stuff reluctantly but other stuff comes into my life, photography, writing reading poetry I cant walk and am in an electic wheelchair but hey what the heck smile and thje world smiles with you. I would say my best tablets are my two citolopram I take everyday recomended by my doctor for the depressions I suffered a few years back. Medication is there to help you make the best of what you are now, we will never be what were again but it can help us make the best of the now. All I need now is something that helps me type good job I checked this before posting you would have though me bonkers. My fingers keep pressing extra letters normally an N when I press the space bar so if you readany of mypostn thjey dont make sence I just didnt check before posting.

Don

Yahh its coffee time here, I also have a good wife, I always introduce here as my “first wife” you need to keep them on their toes. Have a good day. I will our 6 year old grandson is here playing pirates in space rockets.

[quote=“hoppity”]

Hi Kev and welcome.

MS can be so frustrating I have given in gradually relinquishing stuff reluctantly but other stuff comes into my life, photography, writing reading poetry I cant walk and am in an electic wheelchair but hey what the heck smile and thje world smiles with you… [/quote]

Hi Don

You are of course right in everything you say- except as we all know it’s hard to put into practice some days. Anyhow, I’m delighted to report that although I’m feeling exceptionally rubbish today, I’m riding it out far more easily simply because I have started to meet you lot on here, and I know that I’m not alone.

I’m hoping to be able to get back into recording, editing and mixing music once our house alterations are done and I can get into what is now our spare bedroom but will become my study and music room.

I’ve started writing poetry as well! (I always wrote a little when I was younger). What kicked me off this time is having a Kindle, It’s so easy to read poetry if you only have ten minutes and don’t want to get stuck into a book. It was a step from there to reading a couple of books about the composition of poetry (Stephen Fry’s ‘The Ode Less Travelled’ is brilliant!) I’ve discovered a penchant for writing sonnets. Here’s one about disability:

I Used To Do Athletics For My School

I used to do athletics for my school,
Then a three year student interlude
Before I joined a team to play football,
Sundays, usually hung-over and well stewed.
My thirties took me to the cricket field,
Nothing more than running twos or threes,
And once I ran a marathon (well truth
To tell, half-marathon) and wrecked my knees.
I watch the superstars of sport today
And wonder if they realise at all
The brevity of all the skill that they
Are blessed with, and how soon the fall.

I love them for their strength beyond compare,
My surrogates- you see, that’s me out there.