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15 years since diagnosis - warning long post!

Good afternoon. Hope everyone is as well as they can be in these Covid times.

Next month marks 15 years since my diagnosis, which must also mean it's 15 years since I read on the MS forum which existed prior to this one, that someone predicted stem cell treatment would be available in 5 years.

My diagnosis came after several years and several visits to my GP where he adopted a let's wait and see if it goes away approach to my symptoms. That was fine by me, that meant it couldn't be serious. The news came 8 months after first seeing a neurologist, and four months after MRI, lumbar puncture and evoked potentials. He was very blunt and abrupt, but said I had a mild case and that there was no cure and no treatment. He arranged for a course of IV steroids, which did nothing for my symptoms, but left me constipated and unable to sleep for a week.To be fair, after seeing a neurologist my GP was very supportive, although he admitted I probably knew more about MS than he did. He's retired now and I never see/hear from a GP.

As he'd used the word mild, I took that to mean there'd be little or no change for several years. I had sticks, soon after, I bought a wheelchair for occasional use, I got elbow crutches after a fall got my a referral to the community physio and OT along with a perching stool and a bed handle about 10 years ago.8 years ago I got a voucher towards a wheelchair. I've replaced that chair twice since then at my own expense.

I gave up driving about 10 years ago when I could no longer get in and out of the car without  help. Since then I've not really been able to live independently. I can't walk now, I can weight bear to transfer, but actually getting to my feet is becoming a struggle. I've lost my fine motor skills, can't use cutlery, fasten, of unfasten buttons and hooks and eyes etc. My wonderful husband is my main carer, something he does with good humour and without complaint. I pay for a carer to come in a couple of times a week, and a cleaner once a week to take some of the pressure off him.

I've learned that disability is expensive. Adapting our bungalow with ramps, wet room and buying equipment etc has cost thousands. I pay for physio the NHS can't or won't provide. I've discovered people don't like getting in a lift with me, even though I'm not contagious and don't twitch, smell or dribble! Lots of places are inaccessible to me, and thousands of others, because of steps, lack of accessible toilets etc. I've benefited from random acts of kindness of strangers, and found help has come from unexpected quarters, while some of those I thought would be there for us have simply abandoned us.

I've seen four different neurologists, two of whom were MS specialists, one rather disinterested one who saw me twice then discharged me, saying he couldn't do anything for me so there was no point wasting the time, before ending back with the one I saw first. I've heard and read much about wonderful MS nurses. I've never seen one, although I have managed to speak by phone a couple of times.

I'm fortunate in that having been diagnosed aged 49, I'd worked full time for over 30 years and paid into an occupational pension scheme, so at least I don't have to contend with being poor, I feel well and I'm not in pain, and I know people whose MS is much more aggressive than mine. Knowing there's always someone worse off doesn't actually make me feel any better, but helps me keep it in perspective.

I'm not really sure why I'm sharing this, I was just sitting here in lockdown with not much to do or think about.

Oh Flowerpot, I can identify with a lot of what you've written. I'm sure many of us can.  Almost six years diagnosed for me in a couple of months.  All I can say is I have a wonderful neurologist who listens to me and gives me as much time as I need.  She admits that my ppms progression has been unusually rapid and there really is nothing to be done, but she's happy enough to listen to my reasoning and requests for things like Botox and sativex, and prescribes to me on the 'lets try it and see' basis.  Neither have helped btw.

I met the ms nurse once after diagnosis and spoke on the phone once.  In my opinion she thinks she's rather god like.  She isn't.  I'm probably more informed than she is and certainly better mannered!  Like you, I consider myself lucky to have been diagnosed aged 55, had reared my family and bought our house. Our early retirement plans hadn't included ms.  Although I can no longer walk or even shuffle and am wheelchair dependant, I'm thankful i have bladder and bowel control. I can only manage to eat with a fork in my left hand, but that's okay too.  Having had surgery and treatment for breast cancer three years ago I'm glad to still be around I guess.  We're a different kind of build, us MS-ers!

I have MS

Like you MS didn't figure in the retirement plan! It's good you have a neurologist who listens to you. Two of the four I've seen did at least listen to me and talk to me, but one involved a round trip of 100 miles, the other a round trip of 50 miles to be told they've still nothing to offer me. I can get that less than two miles away. My annual review last month took place by phone. It took just three minutes! One minute must have been taken up with introduction and goodbye!

....'And You Took The Words Right Out Of My Mouth..........(Remember Meatloaf 'Flowerpot'?....)......:)


I have MS

I do! 

I have MS

Oh and I forgot to mention urge incontinence, having an overactive bladder which doesn't empty fully. I tried four different drugs and learned to intermittently self catheterise, admittedly after resisting the suggestion for about a year. It still didn't solve the problem, until I was referred to a Urologist, so I now have Botox injections. I can say this is the one thing that has transformed my life. 

Hi flowerpot, I enjoyed reading your post and did find several similarities to my lot.

I wont congratulate you on your 15 year milestone, cos I guess you wont need that!

23 years for me, 17 neuros and I wont bore you with the rest...dare say you've read it before.

I'm so glad we have this forum to support each other.

Keep the faith darlin!


I have MS

Hi Bouds.