Forum

Groundhog Day!

Hi gang!

Sorry, but just need to let off a little steam after speaking to the neuro’s secretary!

Around October last year, my neuro referred be for a LP (only had one MRI at this time so was still un dx’d). I called the secretary after a few weeks and was told they were waiting for the hospital to release funding and to call back, which I did in November to be told the same thing.

When I called at the beginning of December I was told that funding was approved and I would hear within the next week or two.

In January, I was told that they no longer had anyone to perform them at the hospital and would I call back in February.

When I called in February I was told that they still didn’t have anyone but if I wanted to go to a different hospital I would need to be referred again by my neuro and decided to ask him for this at my appointment in March.

In March, neuro decided to instead send me for another MRI and in June I was given my MS dx and told that it was either ‘very mild’ or PP but wouldn’t send me for LP at that point as I was going for other tests and he didn’t want to overload me, which is fair enough.

Last month he referred me for LP, anti NMO bloods and spinal MRI ‘as soon as possible’ as suspected PP and having just spoken to his secretary, it seems that they are, once again, waiting for authorisation for funding.

Graaah! Sorry, just needed to vent my frustration at being stuck in this time loop and I know you’ve probably heard it all before so no replies required (although sympathetic mutterings are always appreciated). Was really hoping this could be sorted in time for my impending DLA renewal…

Mags xx

Let off as much steam as you need Mags. Sympathetic mutterings coming your way ((((((mutter, mutter,mutter))))). I refused to have an LP on the grounds that I’m needle phobic (in a big way) so am humbled that you desperately want to have one done. Can’t believe that ‘funding’ is the reason you haven’t had one yet.

Got everything crossed for you that you have your tests very soon.

Oonagh

xxx

Oh Mags that is just terrible! So awful what is happening to our NHS… but must admit I’ve never heard of anyone having such a hard time to get an LP. No wonder you need to rant!

Have you a letter with MS dx to send with DLA renewal? Last thing you want is a letter saying ‘mild MS’… but if you had one with ‘possible PPMS’ it would be good.

Is there an MS nurse at hospital? If so, contact her/him and ask if you can have a letter with the MS dx, and possible PP. If not, ask your GP if you can have one.

There is something else you could try if you want to. Contact your MP. It’s quite amazing how MP’s can get through the red tape.

You will find the contact details on your local council website or on Parliament website. You could even go to see him/her in regular ‘surgery’… again details online or at local library.

Saying all that, I really do know how hard it is to fight your corner when you feel this ill. It’s such hard work to get what you are entitled to!

You really are stuck in a loop hon and I hope it gets sorted soon.

Pat x ((((((((((((((((((((hugs and mutterings))))))))))))))))))))

Blimey Mags I cannot believe that you’ve had so much trouble getting an LP. I didn’t have any idea that things were in such a state in some NHS hospitals! Pat has given you great advice re: your DLA renewal. Hope you get on OK with it. Good luck with the tests, hope you get sorted soon. Teresa xx

Good luck with it all, I can not believe the hassle we all have to go through, I would love some of these people to have our problems for a day and see whether their views change then. People are so indifferent about MS.

sorry to hear you are having such a bad time, and hope something is done soon

Love Mark x

Thanks so much guys. If I’d been in a better mood I’d have probably found it funny (well… almost).

I know Oonagh, it must seem a bit odd that I actually want one and I think I’m going to give it another week and send him an email asking if he can refer me to Kings, even if I have to use patient transport, I just want to get it sorted.

Pat & Teresa, I think I’m going to be ok as he’s written in his last letter ‘likely progressive and from lack of response to steroids & no remission, possible PP’. It just seems such a struggle to get anything done and the fight for benefits is exhausting…

I know it’s not the end of the world, in fact far from it, if I’m PP, and you guys have shown me that, so thank you so much for all your support. You’ve really cheered me up and I’m ready to start kicking some butt!

Loves,

Mags xx

Gahhhhhhh! Sorry guys, I’m so fed up of this and it’s really starting to get me down…

I called my neuro’s secretary a couple of weeks ago and asked her to tell him that I would happily go somewhere as soon as possible as long as I could get patient transport.

I called her again today to be told that they were still waiting for authorisation and were booking a room and to call back on Monday (as the people organising it would be in then) but it looked like it would probably be ‘around January’.

I know I’m moaning again but I’ve been actually wanting an LP for over a year now, initially to get a dx and now to find out if I have PP (and also, my Devics test is tied in with this), how long does it take?

I know that I will still be the same person and that my MS will still be there so I’m sorry for venting but I know that you will understand that ‘I just need to know’.

M xx

And blah!

Dear Mags,

You are not moaning! You are frustrated and annoyed and all the other feelings that come with ‘this’.I wish we had sound emoticons on here for when we really want to scream I’m so very sorry that you are still waiting and all I can really say is I hope they get this sorted for you asap.

Thinking of you

Oonagh

xxx

Hi Mags, It’s disgraceful keeping you waiting this long. No wonder you’re moaning… I would moan too. I had mine 5 years ago and only waited a couple of months… but that was before this government decided to starve the NHS of funds.

I’m sure you know this… but you won’t get the PP dx from LP (I’ve gone jargon mad here). PP is dx from symptoms and no relapses (just in case there’s any confusion )

Hope you get it soon hon… in meantime, this is a good place to moan,

Pat x

Well, it’s finally happening! Had my spinal MRI (cervical & thorasic) in November (results not in yet) but spoke to neuro’s secretary and have LP booked for Thursday. I’m really nervous as it’s taken me so long to get one. Bloods 9am, LP 2pm so may have to ask Mum to take me. All I have to do now is call back and ask if it’s this Thursday or next, lol! xx

Good luck with it Mogs. Have to say mine was very easy… and I was extremely nervous. Make sure you lay flat for the full time (I think it’s 3 hours) and drink lots of Coke or something with caffeine in (take a bendy straw if you can). It apparently helps. Oh and make sure you pee just before you have it. I spent much of my 3 hours dying to go!

I was very tired for about a week or so afterwards… but it might be that the nerves had worn me out! Anyway I came out of the hospital with a big smile on my face as it really was easy and painless.

Pat x

Mission accomplished Pat!

Took your advice and took a bottle of coke with me (thank you hun). They made me a couple of strong coffies and I had no problems at all (apart from a massive caffeine overload ).

The bloods I had taken earlier in the day hurt more!

Just need to wait for a few weeks for results now. Happy bunny.

M xx

So pleased to hear that Mogs. Always a bit worrying as some people do have a bad time with it… so good to hear yours went as well as mine did.

Now the waiting game… remember, one day at a time.

Pat x

Glad you had your LP successfully with no problems - mine was fine too! As Pat says - you just have to wait for the results now. Don’t think too far ahead and it’ll pass fairly quickly! Teresa xx

Thanks Pat and Tree!

Called neuro’s secretary during the week and she is typing up a letter for me but couldn’t tell me what it said or whether the LP results were in.

I know I’m being a bit silly as there may be nothing to report but getting all knotted up when I hear the letterbox go…

M xx

Not silly at all… it’s horrid waiting for the results. And the worst thing is is that you want a positive so that you aren’t in limboland anymore… but at same time you want a negative as who wants MS!!!

Hope you are told your results in more sensitive way than I was:

Neuro: “I think it unlikely that you have MS but we should maybe to a lumbar puncture just to make sure”

Me: “But I had an LP two months ago… I was hoping you’d have the results”

Neuro: “…oh… really…”

(10 minute pause while he studied stuff on computer)

Neuro: “em… yes… well… em… I’m sorry to tell you this but I am now able to diagnose MS”

Hahahahaha… I have since changed neuro!

Won’t be long now hon… hang in there…

Pat x

Oh Pat, that is terrible! I don’t think neouro’s are renowned for their tact and diplomacy and I have my own special theory regarding ‘mild autism’ and ‘interpersonal skills’.

I feel like I am stalking my neuro’s secretary! I called her last week and she said that she was typing up a letter for me but wasn’t sure if the LP results were back yet. In my defense, I have to say that this does seem to be her standard response so I’m still both anticipating yet dreading the arrival of the post.

Today I finally succumbed to emailing her to ask if the letter was on its way (don’t want to P off the neuro’s secretary!).

I have a diagnosis, so I know that it shouldn’t make a difference as to what ‘type’ of MS I have - ‘we each have our own special MS’, but it does to me. Maybe it’s my way of denying/accepting the fact that my life has changed irrevocably and that I just have to give myself a good kick up the bum and get on with things.

I shall await the clatter of the letterbox (or the ‘ping’ of the email)…

Mags xx

Do you know Mags I think your ‘autism’ theory could be right! I’ve seen several neuro’s or neuro registrars over the past few years and have only met one who had interpersonal skills. He was a registrar and extremely posh but was also very nice and actually listened to me.

Hahahaha love it that you’re stalking the secretary!

Sorry I had forgotten you are dx. I sometimes think that I don’t have MS at all… that it’s all been a terrible mix up and that I’m putting it all on.

I think it’s all part of the denial process.

Hope that letter comes soon Mags!

Pat x

Hope your letter arrives soon Mags - the waiting is the worst bit. Our minds go round and round - thinking loads of different what ifs… Fingers crossed that you get a final answer soon! Teresa xx

Hi, I had to chase and chase for answer to lumbar puncture! I think the neuro wanted a postive one so that he could give me an MS diagnosis. It came back negative and he is clueless as to what is up now. I have one lesion in the cervical spine causing weakness and spasticity in one leg.

If your lumbar puncture is negative will the neuro question the diagnosis that you have been given ? What symptoms to you have?

Regards

Moyna x