Today marks 17 years since I was given my diagnosis of PPMS from a famously abrupt neurologist accompanied by the words, there is no cure and no treatment, something he reiterates at every annual review. I came to terms with that a long time ago, he doesn’t need to keep reminding me. Those reviews the last two years have been by phone due to Covid. 2021 he gave me three minutes of his time, last year, just one minute! It will have taken longer to dictate the letter to my GP which I also get a copy of. It’s 21 years since I had double vision, and the unexplained falls go back further than that. It was only when I developed dropped foot and problems walking did my doctor acknowledge there was actually something wrong! Giving up driving just three years after diagnosis marked the end of my independence. Foreign travel is now just too difficult. I can no longer walk, though I can weight bear to transfer. I’ve lost my fine motor skills but I feel well and I’m not in pain. My husband has taken on the burden with good humour and mostly without complaint. I’ve learned a lot. Having a disability is expensive, wheelchairs, wet room, ramps, carers, physiotherapy to name just a few. Again I’m lucky I had a career and have a pension so I don’t have to contend with being poor as well as disabled.
I’ve learned who my friends are, and equally important, those people who aren’t! I have help and offers of help from unexpected quarters, sometimes from those with their own difficulties and problems. I’ve benefitted from random acts of kindness from strangers, and been frustrated by a lack of compassion and understanding from others, sometimes from people who should know better. I’ve learned some people think I’m to be pitied, I even had a man drop to his knees in the middle of a street to pray for me! Bizarrely I’ve discovered people are reluctant to get in a lift with me - I’m not contagious and I don’t twitch, dribble or smell! I’ve realised just how many places are not wheelchair accessible and therefore closed to me. I’ve had well meaning people assure me that, “They can stop it in its tracks” and “They can do so much for it now” I wonder who “They” are, and if neurologists are aware of these miracle workers?! Someone even told me having MS meant I’d never be depresses! That still has me baffled!
If you’ve got this far thank you for reading. Have a good day everyone xx
Hi I have had MS for over 30 years now. Reading your experiences mirrors mine except for you’re awful neurologist!! Always here for a chat 
Eeeh! I was reading this long and interesting post, before I’d looked to see who the author is!
Flowerpot…me old mate! We go back a bit, you and I. And we’re still here to tell the tale to those new to the condition and all the loveliness that goes with it chuck!
18 months ago, I became a born again Christian. I’d reached a point where I didnt know how to imagine a future, after 25 years of PPMS.
BUT then Jesus came to me, took up my yoke and carried it for me.
Now he is with me 24/7 and I feel safer than ever.
You take care sweetheart.
Much love Bouds aka Polly aka MS43 xxx
Hi Flowerpot
I’ve had this since the 1980’s and your Neuro sounded just like the one I had. He told me no cure, no meds, go home get on with your life and forget about it. Trouble was I tried but the MS wouldn’t let me get on with it! Thankfully he has retired and now I have the nicest neuro you could wish for.
I agree with all your post, take care.
Pam x
Some neurologists (like regular people) are shockingly bad at people skills. A little empathy and consideration, along with patience and and the ability to listen would go a long way to help. I don’t have a lot of these skills, but I am sufficiently aware and considerate to try when needed.
When I had “naff” neurologists I found that more MS nurses are approachable.
Wishing you all the best
Mick
I’m sure the reason people don’t get in the lift with you is because they don’t want to block your manoeuvring space, or make you feel crammed in, or have their bum almost in your face.
I spend much of my time telling people in close proximity to watch their feet as I manouver my chair.
And yes, thinking of their toes!
I have a strng faith in God but today im fed up im still tottering about but im so tired i have to lie down nearly all day.i cant go out at the moment and i live alone niw im 75 yrs old it makes you depressed… what meds do they gve you fot relapse thankyou
Having PPMS means I’ve no history of relapse therefore no meds. I’m on Amitriptyline which was prescribed soon after my diagnosis. It’s an antidepressant and is often used to help with pain. However at the time I wasn’t depressed or in pain, so I’ve actually no idea why it was prescribed. At first it really helped me get a decent nights sleep (I am one of life’s insomniacs) but it’s no longer effective for that. I’ve carried on taking it in case stopping makes me feel worse.
Maybe you should contact your GP.
Hi again, I strongly believe in amitriptyline keeps my worst pain away, as helping me sleep. Been on it 23 years.
Boudsx