Forum

Finally?!!

So after being diagnosed 2 weeks ago I’ve FINALLY got the right dose of steroids (the GP gave me 30mg instead of 500mg!!!) ive got everything crossed they have even a fraction of an effect as for the last 3 days I’ve been feeling really really rubbish (noodle legs, optic neuritis, tired beyond belief) and today had the worst tremors yet. Also I just received my consultant appointment but it’s not until the end of June. Anyone else had to wait this long to be seen? I’ve not seen ANYONE from the MS team since my dx and had to get the number for the MS nurses off my own back. I’m feeling very abandoned and lonely…is this kind of “limboland” commonplace? Ophelia.x

Hello and welcome to the madhouse hehehe.

Your are not alone,I had been waiting nearly 3 years to even get an MRI scan.To get help I had to phone social services and go through many many diffrent numbers before I could get any help.Not one person could give me any help or a direct answer.Many of us are going through the same thing.I had to get myself a physiotherapist who then helped me greatly.

Ring your GP and ask them to contact the MS nurse and the Occupational Therapist ASAP.

No one offers help,we have to beg for it and make many phone calls.

Ring Social Services adult services as they can help with any support such as carers,personal cleanyness if and when you need it,they can also look into home needs such as rails,intercom,life line etc.

Please do not think your ever alone with all the struggles we all face,we are here to help and advise you.

Charlie,x

Yes, I reitterate the above. Seems the louder you shout the more help you MAY get. Afraid we all get diagnosed then think there is a care system to fall back on. Sorry you feel you need reassurance and care and am having to wait.

There are lots of msers on here who have waited years for a diagnosis, then when that comes, no help forthcoming. Im sure if there was a cure then you would get either the pill or magic bullet, but as yet nothing, so in the meantime its management strategy and if lucky DMD’s and MS nurse will take an interest and help guide you to whats on offer. Good idea to get gp on side too.

You are never alone on here, we are strong together. Talk away and in the meantime your appointment with neuro will fly by and youll be there before you know it.

best wishes

bren

x

Hello Ophelia,

Please do not think that you are alone. My MS nurse was trying to get me an appointment to see my neurologist at the end of last year, and this only took place this month - my MS nurse was very embarrassed I think. I have just had a 500mg course of Medrone steroids, and yes they do work, but when I came off them the symptoms seemed to pretty much return. I have another app. to see the neuro, but not until late June, so again I will be left dangling.

Best of luck with your steroids - prepare for the insomnia, so get yourself a long and improving book!

Best wishes,

Moira

I work for the NHS trust that are supposed to be co-ordinating my “care” so as much as I don’t want to, I WILL use it to my advantage!! You guys on here have been incredible support. Thank you so much!!xx

And Moira I have a pile of books waiting!!!x

If you have a book it needs to be verty light, your concentration will be shot to pieces! Welcome to the world of the forgotten. I was referred to see a new consultant at a new hospital in October and didn’t see one til January. Luckily once I got into the system I got MRI scans and DEXA really quickly, and I’ve since seen the consultant again in March and started on Tysabri.

The problem is related to waiting time targets (you have to be seen and first treatment started withing 26 weeks of being referred). This is a problem all over the country and as I usually work at the other end of the system I can see how frustrated everyone gets by it (especially if you are then referred to the wrong person for the job, or the clinic has been cancelled).

Many hospitals are now doing evening and saturday clinics to try and ensure that people are seen much sooner.