Forum

Going it alone!

Anyone else going it alone - not on any medications - not in contact with a neuro - not seeing the m.s. nurse - and only seeing the g.p. for non-ms things?

Hi there,

Well, not quite that extreme, no.

But I’m not on DMDs, don’t have an MS nurse, only see the neuro once a year, and rarely see the GP about anything - MS or not. I don’t think, on average, I’m at the GP’s any more frequently than before I was diagnosed, although I am on symptomatic relief (pain killers + Baclofen) and have had a couple of telephone consultations about fiddling around with those.

My neuro suggested I might want to cancel the next appointment, if I was “doing OK” - I was only in there two minutes the last time, which made it a bit of a waste of the taxi fare, and the time spent getting there!

However, I will probably go along anyway, as I’m a bit concerned I might be forgotten all about, if I don’t show my face once in a blue moon.

I’m not really looking to start any new treatment at the moment, but new stuff does come along from time to time. I worry that if I don’t keep in contact at all, I may miss out on something that could potentially be of interest.

Tina

I was diagnosed in 1985 and was fortunate enough to be able to continue life and work until 2004 without DMT in fact any drugs. I must have seen my GP four or five times during these 19 years and each time I asked for a dose of steroids to help me get over a relapse (generally a visual one). As I stated I was fortunate enough to get through these years without treatment or neuro people at all.

Now in 2012 I rely on a DMT (Avonex) although I feel is probably not needed as I have not had a relapse for four years, a bucketful of tablets for pain relief and sachets of fibagel to help with bowel stuff.

So I am happy for those who can continue without need for help as I did for all all those years, but I am now unable to get by without help and am extremely grateful for it.

Good luck to all who use this forum in fact to all who have MS. As you all know you are unique with whatever symptoms affect you and how you go about dealing with them.

I ‘did it alone’ for 18years

on diagnosis i was discharged,and was told to go away and get on with my life,i was a bit hurt by this,but go away is what i did,

i could get on with my life quite normally, for the 1st 10 years or so, apart fromt he odd relapse, some were(andstill are) severe though,and can leave me in bed for months,

and i am now spms, and told that theres no treatment for spms, i do now see an ms speciaslist every year,but thats only to keep me in the system,becuase my gp thought i should be in the system, i was also told 20 years ago that a cure was just round the corner !!! some b****y corner.

jaki xx

I spent many years out in the wilderness, not seeing a neuro and what was an MS nurse? But my GP persuaded me to get back in the system and I have to say that I can say only good things about MS care in Leeds.

I see the neurologist every 6 months, she referred me to an MS physio and MS nurse.
They in turn referred me to wheelchair services, incontinence nurse, neuro rehab outreach services and fatigue workshops.

I can’t say that I’m cured but I feel coddled by the NHS. I have also had help from housing and OT. It’s a bit lonely out on your own and I think I am a poster girl for getting help and support.

Jane

I went it alone from about 1999/2000-2004, initially because my neuro couldn’t do anything for me and he didn’t really know very much about MS, but then because my MS stabilised and I didn’t really need any help. It all went wrong in 2005 so I saw a new neuro and he put me on Copaxone which I started in 2006. From 2006 until 2010, I was only on Copaxone; no other meds or help & no neuro appointments. Then it went wrong again and now I’m on lots of different meds that I couldn’t function without, I see my neuro regularly (3-6 months depending on what’s going on), I have a sticks and a wheelchair partially funded by the NHS & council and I have a motability car. All in all, I’m rather glad I’m not going it alone any more - I reckon my life would be much harder. But then, that’s because my MS got worse. If it hadn’t, I’d have perfectly happy never seeing a neuro again!

Karen x

Hiya

Not sure that I count as ‘going it alone’…but for a very long time it surely felt like that.

11 attacks in less than 2 years-carers in x4 daily to attend to my every need. Scarring on brain/head and spinal cord-as confirmed via MRI BUT ‘neuro’ (insert expletive of your own choice!) said it was ‘all in my head’ so I was left floundering and dunno where I would have ended up if it hadnt been for the support of my GP.

No DMD’s offered (tho I am happy with this). I now have access to an MS nurse-tho rarely see her (my choice) When I do see/email her she is brill as she actually listens to me-I aint just a name/number.

It saddens me to read what a waste of time folk think the neuro appointments are (for some). I agree but its not the way it should be. So for many I suspect they feel as if they are ‘going it alone anyway’.

I am aware this isnt the case for all! There are some fantastic individuals out there doing a great job-just a shame we all didnt receive the same consistent high standard…

The flip side of ‘going it alone’ empowers me! Its my MS (I know some dont agree with that either!) but I feel it gives me more control-not of the path of the disease but how I react/cope with it.

Wishing you all a happy day tomorrow!

Ellie x

thanks for the replies.

Your reply ‘jaki’ struck a chord - I was told many years ago that ‘the researchers are on to something’…whatever it was I’m still waiting!

To stay legal with DVLA and motor insurance,if you drive,one day they will knock on your neurotic’s door.No neuro DVLA report no licence.

Or tell nobody,never crash,and have no involvement with …

Wb

Hi

Its not so much that I’ve been left to go it alone, or that I anted to go it alone

Its that I’ve been ABANDONED

;-o Mary

Hi, I get quite concerned when I hear how some of us are discharged by their neuro…as there is nothing they can do for that person.Whether we are definitely diagnosed or not, surely we should be kept on the books, if only so that up to date reports can be given should the DWP ask for such reports, to get the benefits we are entitled to.

I have spoken to my MS nurse about this, as my diagnosis keeps changing. She has assured me that I will never be discharged.

With regard to not using any meds…I need mine for help with nerve pain, spasms and bowel and bladder problems.

Without them, i doubt very much that I could cope.

Good luck to anyone who is strong enough to do so.

luv POllx