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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.
 

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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!

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

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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.

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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!

Boudsxxxxx

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I do!

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!

Hi Bouds.

Hi Flowerpot I have nothing to add to this, I was diagnosed nearly thirty years ago and have enjoyed every minute of Don

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30 years for me too - I blame Chernobyl

Elaine

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Hi flowerpot and all, yeh mine is 32yrs but was only diagnosed 12yrs ago.

At that time I had 2 ms nurses, one worked alongside the neurologist and the other was the one who was assigned to me but I could contact either for extra advice!

I had my main nurse for about 8yrs. We used to have a laugh together! Then she left suddenly after dispute with newish consultant! Since then it’s all gone to put! The other nurse left about 1yr later.

Now covid!! Spoke to latest nurse, she seems too busy to support in any way. None of the letters she promised came through to me or my GP. I have to keep chasing everything (medications etc).

I don’t bother getting advice anymore, I just come on here and read everyone’s posts and always find some answers, SO THANK YOU ALL!!

Kim X

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Flowerpot your story is similar to mine.I stopped seeing neuro’s a long time ago.I was wasting my time.They have done nothing for me in all my years of MS which will be 30 next year.I have had no help from anyone in all this time.I quickly learned how to just get on with my relapses and to get over them myself too which has been very hard.The MS nurse i saw was as much use as a chocolate teapot,i only saw her 3 times and that was a waste of time too.

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I think nearly everyone has found the same response - Neurologist says there is nothing to offer us and MS Nurse - who never does any hands on examination or baseline assessment in order to assess year on year progression - only offers a sign posting service. In all honesty I learn more from this forum than qualified Neurologists or Nurses.

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…and me Elaine! :slight_smile: I was still living in The Netherlands (as most dutchmen do…) at the time, and my father insisted that ‘Chernobyl’ would not stop him from eating his home grown vegetables, and of course so did his children out of appreciation for his hard work (…). Sh…ugar, I should not have mentioned where I originate from! But…, will the authorities really send me back to Holland now ‘we’ are no longer part of ‘Team Europe’?.. I have lived here now (and worked when still possible, of which 5 years in Care!) for nearly 26 years, married a wonderful british lady, who has amazingly recovered from a stroke herself that she suffered a few months after the birth of my daughter, who has severe-learning-difficulties and will live in Care for the rest of her life (sorry, I’m just preparing my case…, just in ‘case’…, the perpetrator’s name responsible for all this is a Mr Aaa* by the way, the ‘surgeon’ (what’s in a name… at the time…, where was I… (do not worry, will ALL be in my book that I started a year ago…, to be published when I am ‘up there’ and my (healthy!) son needs some money, now the relationship with my father is extremely poor, due to bad choices he made after the death of my dear mum…(if you know where I’m coming from…, and don’t say ‘Holland’…:slight_smile: Well, at least I am not the only one having family issues…, what’s the name of that ‘actress’ again whose married surname now starts with a ‘W’…, well at least for this moment depending on what she has told ‘Opera’ Winfrey(?)…

Also (…, do you now understand why I started writing a ‘book’…), my wife and I, both officially ‘vulnerable’, had our first ‘jab’ today, and I had a lovely chat with the wonderful volunteers running the place!! CLAP CLAP CLAP! Also ‘2’, we (I…) will soon have our (my) new shed (second house…), as the other shed almost burnt to the ground! And and and…, I may ‘have’ officially PPms, I am still able to drive my car (and thank God or whoever for that…) so I can still visit my disabled daughter, now looked after by mainly ‘black’ carers, some of the most compassionate carers she has had so far!!!, 'Black Lives DO Matter!!! Bla Bla bla, my ‘two bottles’ (…) have arrived, time to relax… (and to forget about utterly selfish materialistic neighbours and utterly ignorant ‘official’ dutch family members for one moment!.., well at least I could give it a try… Well meant apologies to those readers here, whose PPMS is so much worse/aggressive than mine!! You all take care!

…what I forgot to say…, ‘Flowerpot’, keep on writing!!

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Wow. Interesting reading all of this. It seems that many with PPMS are very poorly served by the NHS.

I get the feeling that the neurology discipline does not attract doctors with empathy, or if they have empathy, and want to do good, they move on to areas that offer more reward (i.e. where there are effective treatments). I guess people with PPMS for whom they have no medicines to offer, along with all those other people with neurological conditions that they can’t even diagnose, and those with the likes of ALS where again there is little by way of treatment, even of symptoms, these people are a constant reminder that they as neurologists are failing. So it is easier to just dismiss and forget those patients. Not to say there aren’t any really good empathetic neurologists - they just seem to be in short supply.

I imagine in privately funded healthcare things might be a bit different. Whilst they might have little to offer by way of therapy, they have a reason to keep on seeing people with PPMS as it would at least offer them a useful income source …

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Flowerpot you could be writing my story I’m tetraplegic now after 18 years 7 of which I was undiagnosed. I too saw disinterested GP, Neuro and waited 4 months between MRI scans by which time I had deteriorated more. Just nobody seemed to want to know. Hope you are doing ok

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I was diagnosed 11 years ago and before the lockdown I was working full time and getting around an office. Since lockdown my mobility has become rubbish. I use a stick when I am out on my own as at least then if I fall over people won’t assume I am a drunk :stuck_out_tongue_winking_eye: when doing shopping trips or for days out I have a mobility scooter called Madge so that’s all good. I find my one leg just has a mind of it’s own and chooses when to trip me up. Last week I had been for a walk all good feeling quite pleased with myself then went into the bedroom and fell over bashing my head on my office chair. Luckily I still have some mobility but dread the time I won’t… :flushed:

Sorry Flowerpot !
I started typing a reply, then tried to delete but have only just returned to the forum and haven’t learnt my way around it yet so got it all wrong !
I was just going to say hello and tell you that I have also had this ms for a long time (21 years) and I understand how frustrating it can be.
Hope I learn the way round soon
Take care x

I read your post symptoms diagnosis length of disease and your story is so similar to mine it’s scary. Wheelchair bound, loss of motor skillls don’t do buttons or zips and can no longer grip cutlery. I`m a 51 year young male whose twin sister unfortunately died from complications due to a particularly aggressive form of ms . Don’t really know why I’m sharing this information it’s just that it’s almost refreshing to hear a shared experience. I guess it’s just comforting to hear I’m not the only one and if I need support or can offer it There is a place to share