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edmontonalberta
3 weeks ago

@watsoncraig

Do you have a personal physician who can assist?

My Neurologist is useless with everything; my Surgeon was useless (he is now out of my life). My personal physician is useless in solving my physical problems – yet, he fills out the paperwork to keep Government officials happy… 😉

Maybe Canada is different…


highlander
3 weeks ago

@edmontonalberta
This is Britain my friend….
You must have heard of BREXIT.
It’s being used an excuse for everything!
We’re all doomed! 😱
We need paperwork for asking for paperwork.


stumbler
3 weeks ago

@watsoncraig , you think you’ve got problems. My Neuro discharged me about 18 months ago, when he was moving to another hospital.

My answer of “N/A” might account for why I’ve been waiting since July for my licence back.

I did have to see my GP for an examination on 7th September. My licence expired in October and I’m still waiting…………….


watsoncraig
3 weeks ago

@stumbler they have stuck you on the back burner (MS pile).

As @highlander says its all the fault of Brexit


grandma
3 weeks ago

@watsoncraig only a year! I haven’t seen mine for 7 years, he doesn’t do ‘meeting mere mortals’ I’m quite happy seeing my ms nurse every 3 months, she knows far more than him about living with ms on a day to day basis, just had the annual MRI and she will pass on any relevant information in a much more digestible dorm than he’s capable of!😍


meg_kingston
3 weeks ago

Suggest your GP and make an appointment to bring her/him up to speed. You might have to pay, but GPs can be fab at this. Good luck!


watsoncraig
3 weeks ago

@grandma , annual MRI wow they told me with PPMS there is no point.
@meg_kingston thanks I will see what the GP says


grandma
3 weeks ago

I have spms so I get the MRI😜


tessa
3 weeks ago

@grandma I have SPMS and I don’t get anything ! Certainly no annual mri and as I have said before I get that….no treatment available so why have further investigations ..there seems very little point.
@watsoncraig @stumbler
But I too have just received my driving licence renewal stuff and like @stumbler I had no consultant to reference ..I put my GP and received a letter from DVLA saying they had written to her but it could take 6 weeks to get the info back.
I checked with the surgery and she has received it but she hasn’t asked to see me…she does know me quite well as she is my next door neighbour ..so not sure where I am on that but wait to see what happens . Keep us posted on your licence John
Tessa


billkittens
3 weeks ago

@watsoncraig

Would there be point for PPMSers to have an annual MRI?

Bugger all treatment to disease modify

Good luck with the driving


grandma
3 weeks ago

@tessa everything I get is through my ms nurse. I see her every 3 months because of having the checks on Tecfidera. Don’t get me wrong, she tries to help as much as possible but even she hits brick walls. She emailed the local ms society in front if me 2 months ago, I had told her not to bother cos she had to mention my name and .I am persona non grata with the local society. Used to have a huge amount to do with them. On committe, weekly yoga etc., but .I dared to get breast cancer, and they don’t deal well with 2 disease. She also tries to get me help from another NHS department in August, asked quite blithely when last I saw her, did I enjoy my appointment, did I find it helpful, couldnt believe it still hasn’t happened. She wrote again , still no response, she is tearing her hair out. It has not been 9mths with no word from them. We don’t exist, and even Stumbler quote of ‘it’s the squeaky that gets oiled’ doesn’t work sometimes😞


tessa
3 weeks ago

Hi @grandma .it interesting that your ms nurse gets you the MRI s …I hadn’t realised that was possible…I had thought that was consultant led ..what do I know ! .but I assume you are having MRIs and also meds because it is not clear that you have got SPMS and the options are being kept open for it still being RRMS ? As far as I am aware there is no approved medication for SPMS .


stumbler
3 weeks ago

OK, as you guys forced the issue, I called the DVLA. They’re in the process of issuing me with a licence, which will be further restricted by my need for adaptations.

But, I’m still legal to drive. I just wish I could get myself down to my car. I’ve driven it twice this year. However, I’m still optimistic that I can get myself mobile again (ever the optimist!)


edmontonalberta
3 weeks ago

@stumbler

What I like about driving is that I do not need to be mobile since the car is mobile – so long as we are somehow able to get into the drivers seat… 😉

Don’t get me wrong – the 16 hour a day drives are long gone. And I need to ensure I pull over for a rest when I get tired.

Other than that; put me on the highway. So long as one foot works on the gas pedal & the other can hit the brakes if needed… LOL


watsoncraig
3 weeks ago

Glass half full attitude, good on ye


tessa
3 weeks ago

@stumbler …,good …glad you have hassled .who did they eventually check it out with ? GP? .I hate hate hate driving now and hardly ever do it ..seem to have completely lost my mojo over it . Gone are the days of 7 hour drives ( generally at over 80mph ) down the motorway with one brief stop for a sandwich in the car . But I have applied to renew my licence because I still want to feel the option is there and yes I do have hand controls ..I think that is the problem I just don’t like them and would prefer my old non automatic Fiat panda which I loved hey ho onward and upward


stumbler
3 weeks ago

@tessa , yes, I did pop into the GP to be “examined”. And yes, I miss my Vectra GSi, my first brand new car. That had some performance. I could smash the motorway speed limit in 2nd gear!

Oh well, at least I can say, “Been there, done it”. 😉


grandma
3 weeks ago

@tessa, hit it right on the head, having had rrms for 23 yrs and suddenly this last yr going from walking to not walking, falling all the tine, tripping up etc., I think they’re hedging their bets. In Stoke we have a world recknowed ms centre of excellence. God, oh sorry the consultant neurologist, does not see see mere mortals. Much too busy writing learned papers on the ‘technical side’ of ms, no experience of living with the beast day to day😡Specialised ms nurse knocks him in dicky fits and is the person I see. When I went a couple of months ago she looked at the notes and said “we need an up to dare MRI I’ll book it” was expecting to wait months, got a letter last wk and went for the MRI on Sarurday. Apparently they are so behind they now do non-urgent ones on Saturday! The only problem was (and I’ve had dozens of the things over the last 25 years) that now I twitch all the time and gave lost my ‘choke’ reaction so what should of taken an hour took 21/2! I did suggest that they knock me out, was in tears because it’s very difficult to stay still with ms. Never Ming, going on 28th December for my normal3 monthly visit so will get the results then😍


watsoncraig
2 days ago

Well the DVLA have said I am to be assessed by my GP so an appointment has been made and the 28th can’t come quick enough.

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