How do I do this with Grace?

New diagnosis and before diagnosis
, , , ,
1

Hello
I’m 53
Female
Until 2 weeks ago I’d never really heard or known anything at all about MS
I went for an eye test, I had an odd shadow in the lower right eye and ‘missing’ letters when reading.
Cue emergency referall to REI
Then this strange mystery presenting with no pain.
Lots of questions from an eye doctor and a trainee GP about dwelling in the optic nerve. The consultant was called in. Do I smoke? Nope. Through the menopause? (Bit presumptiv and No) Bit overweight (I’m 11stone & 5’2!)
Might be a stroke
Any other symptoms?
Well yes, a few. Pins & needles in hands and feet. (Carpal tunnel previously diagnosed but I decided not to have steroid cos someone didn’t feel right about it) 2 numb toes. Hip pain going back 9 years that’s been known to give way(diagnosis bursitis) joint pain, (it’s just wear and tear) tripping ending in 2 X-rays last year, fatigue and other things that I have been putting down to the menopause for at least 4 or 5 years.
Consultant put a few cards on the table and referred me for an urgent MRI; possible stroke, Papilladema, Brain tumour, MS

So I’ve had a head MRI and am waiting for the results.
My GP has promised a full spinal and then a tap if inconclusive. She’s amazing.
I’ve read loads on everything he’s thinking about. I don’t get head aches, I have a teeny bit of cholesterol and slightly low B12. I’ve lost some weight, cycled more and beaten myself up about life choices, enjoying good wine and a vibrant life.
Then I read about the hug and remembered an episode’s about three months ago where I felt like I was being squeezing through my story and rib cage. I didn’t know if it was a heart attack or indigestion but it was truly awful and I had to sit quietly in my kitchen where evening it passed. I had it twice more over the coming days, slight less pain but still enough to floor me and render me speech. And I didn’t tell anyone.
At my GP’s suggestion I downloaded the NHS app and can now see all of my visits. I look like a total hypochondriac, nothing can be found wrong with me at each visit despite good investigations. I’ve suffered low mood at times over the years as well.
I used to run, dance three times a week and managed to walk 500 miles across Spain two years ago. This year I competed at a folk dance festival and could barely walk afterwards but blamed my shoes.
Now I’m so scared I’ll end up in a wheelchair and a massive burden to my adult children.
I’m self employed as a curtain maker, within my eyes and hands I have no livelihood - I literally don’t know how to do anything else and I’ve been divorced for 7 years.
How has this happened so fast? And yet so slowly?
Sorry for the crazy long post, I want an answer and I’m begging to see what that’s looking like but I’m not sure which one I want and I’m finding it hard to accept that I don’t get to choose this.
It feels like the weirdest dream, like I’ll wake up and pull my running shoes on again, that I won’t be in tears walking from the shop to my car and lifting my damn leg in with my hand.
Can I fight this with mind over matter? If it is MS then I’ve been gritting it off it for years anyway, can you hold it at bay with angry determination?
Or am I just desperately clutching at straws whilst sinking further away from my active life.
How do you all manage your symptoms with Grace and not get cross with yourselves?
I want to practice gratitude for all I’ve already had and feel selfish when I see so many young people with MS, that can’t even dream of being so active.
But I’m honestly just not ready for it.

In Live & Light
Laura

1 Like
2

Hi Laura, I feel for you and your anxiety but hope that my reply gives some reassurance. I’m a male who was diagnosed at about your age. The diagnosis followed a bout of Optic Neuritis- I lost just about all vision in my right eye. So, where am I after 18 years or so and aged 70 (71 next summer)

Well I can walk although after 10-15 minutes or so I struggle and I use a mobility scooter for anything longer. It’s my right leg that is affected but my left seems generally fine. My right hand can sometimes lose some of its dexterity but so far, nothing serious. My bladder control has been affected which means I’m always keeping an eye on where the nearest toilet is but so far I’ve only had one ‘accident’.

Slight constipation as well and periods of ‘fatigue’ but that’s sort of it (oh and the vision in my right eye returned 90% or so over a couple of months)

After diagnosis I was put on Avonex ( one of the few first disease modifying treatments). There are now many more treatments and many of these are significantly more effective than the early ones.

I follow all the general advice on diet and exercise

1 Like
3

Hi Laura , I am sorry to hear about your struggle with an uncertain diagnose at the moment…
Personally, I was pretty much the opposite of you when I got a certain diagnosis of MS, but I know uncertainty is a maddening thing.
You do seem like you have a full life, and theres nothing wrong with that.
While I know it’s hard, it is probably the best to wait for a definitive diagnosis or something like that. You will gain nothing if you keep beating yourself up for something that you can not control.

I would class myself as one of those “young people” and I don’t see you as selfish in any way.
Your pain is just as valid as my pain is. It’s not a challenge on who is in the most agony , after all :slight_smile:
And you can be grateful for something in the past , but still be scared of the future, too.
I hope this takes some of the stigma and possibly self loathing away from your mind, at least temporarily.
Try to be kind - to yourself, is what i’m trying to say, I guess :slight_smile:

Patsi

4

Thank you so much for your kind words Patsy. I’m sorry to hear that both you and your husband have these difficulties conditions to live with but I hope you find both practical support and kindness here in the UK.
In the meantime I’m taking life one day at a time and really appreciating everything I have :smiling_face_with_three_hearts::maple_leaf::heart_hands:

5

Thank you so much for sharing your experience with me - and your age! That’s really awesome, it gives me a lot of hope and I’m finding that paying better attention to my diet definitely improves my symptoms a little bit. Every post I read about Optic Neuritis suggested that whilst it will never completely go, it’s likely to improve a lot over the coming months. Hoping for more information when I see the consultation again in a couple of weeks but I’m prepared for the longer wait if necessity. It’s so helpful to read other peoples experience and to understand that there is a fairly lengthy period of diagnosis, being prepared for that helps me with being patient.
Take care :heart_hands:

6

My pleasure. MS is the pits but for me, it hasn’t been the end of my world. Pleased to say I got married a few years after diagnosis and by and large we live a pretty normal life.

When first diagnosed I spent time learning about MS and came across a book and website called Overcoming MS. The title is a little misleading because it’s not setting out any ‘cures’ etc but makes recommendations and suggestions on diet, exercise, mindfulness/meditation in addition to whatever Disease Modifying Treatment you are on. It’s by a Professor of Medicine at an Australian University who has MS himself. By and large I follow the suggestions and if nothing else they make for a healthy diet and lifestyle.