How long for LP?

New diagnosis and before diagnosis
1

Hi Guys,

I haven’t been on here for quite a while now. So many things to sort out at home that I haven’t had any energy left to communicate so I hope you don’t mind me jumping back in with a question (and probably a moan too!)?

How long has it taken you to get a LP after referral?

My neuro referred me for one in June/July when I last saw him. I called in September and was told there was no money in the budget at my hospital. When I called in November, I was told that (luckily) the money had just come through and appts would go out in December. When I called in December I was told I’d hear in January and when I called a week ago I was told that they no longer had a registrar to do it and my neuro would have to refer me to Kings in London.

I am so tired of feeling like this. I have been unwell since 2004 and in 2008 finally got a diagnosis of PVCS (Post Viral Fatigue Syndrome) and was told I’d get better with CBT (!) and I had to give up my job (well, jump before I was pushed).

Every year I get a little bit worse.

My MRI (early 2011) showed lesions but not enough to diagnose MS and my EVPs were clear. My neuro said when I last saw him that he was still thinking MS (although to me, some of my symptoms seem to be more ME).

I know I’m probably being impatient but I just want to get a diagnosis and hopefully some treatment that might mean I can go back to some form of work.

So sorry for moaning, just feeling it’s all too much at the moment.

Mags

2

Hi Mags

I saw my neuro for the very first time in July '09, we chatted, he examined me then sent me straight upstairs for blood tests. In the August I had EMG tests at Haywards Heath Neurological Centre and a few weeks later I went back to my local hospital for the MRI. My neuro rang me at home about a month later to arrange to see me two days after that at the end of his clinic. He went through the scan with me and made arrangements for the LP which I had done in the November at my local hospital. In between all the appts I had lots more blood tests done. In early January 2010 I saw my neuro for the remainder of my results and was dx with RRMS.

I realise that 6 months from start to finish is quick compared to some peoples experience and I know I’m very lucky in that my neuro is an ms specialist, so maybe that speeded things up somewhat in terms of arranging the various tests involved?

But even so, I don’t think you’re being impatient at all!! In fact in my opinion waiting over 7 months just for the appt for the LP is completely unnacceptable. If it were me I’d be on that blower morning noon and night until ones been arranged. I also find it hard to believe that a hospital hasn’t got someone on hand who is able to perform an LP. It’s up to your neuro to ensure that one is performed if that’s what he’s requested.

Can you not speak with your GP and see whether he can find out exactly what’s going on up there - he may be able to push things forward or refer you to someone who can help you.

Have you considered making a complaint?

Good luck, I hope you get somewhere, will you let us know how you get on?

Debbie xx

3

That’s b***** ridiculous!!! It must be against the guidelines. Have you tried contacting your neuro? Has your GP got involved? Have you emailed your MP?? Time to kick up a major fuss!

Of course, the neuro (or GP) could send you for another MRI instead. New lesions in the right places would mean that an LP isn’t needed. Perhaps you should try that route too?

Good luck!

Karen x

PS It took 3/4 months for me to have my LP after the neuro referred me, but that was a long time ago (1997/8).

4

This is an absolute discrace! Karen is right, kick up a fuss with someone. Get onto your local MP.

My neuro said at my app on 16th August that he wanted to do bloods and if they came back clear he would reffer me for a LP. Got the bloods back mid Sep, reffered and got the letter about LP on the 13th October (on honeymoon) which was on the 24th November.

Good luck x

Lindsay

5

Thank you so much for your support guys. I did reply but it seems to have disappeared!

I’ve made an appt with my new GP for Weds and hopefully I’ll get some help from him too.

I’m sure I’ve said this in a previous post somewhere but I’m also concerned that in his last letter to my GP he said that there aren’t enough lesions on my MRI to diagnose MS using the Barkoff criteria. Is this criteria specific to diagnosing from an MRI or should he be using the McDonald criteria? Am puzzled!

Many thanks again and I shall let you know how I get on.

Mags xx

6

The Barkhoff criteria are for dissemination in space using MRI - they were the ones that were used in the McDonald criteria, 2005. They were 3 of the following 4: 9 lesions, 1 x juxtacortical lesion, 1 x infratentorial/spinal lesion, 3 x periventricular lesions.

They have been replaced by the latest McDonald criteria, 2010. That is: at least 1 lesion in 2 typically MS places (i.e. juxtacortical, infratentorial/spinal, periventricular).

Your neuro is out of date

Karen x

7

Oh dear!

Maybe I’ll ask the doc if he can refer me to an MS specialist (my neuro specialises in headaches and chronic & neuropathic pain and I was referred to him by my previous doctor)…

Thanks Karen xx

8

Ok. Had my neuro app’t today. I made a big list of new, worse and ongoing symptoms for him to save time (10 minute slot, gogogo).

The new symptoms were:-

Dizzyness. Like the ground is shifting under my feet, even when sitting down.

Shortness of breath with chest pain, can’t seem to get a full breath.

Headaches which I don’t normally suffer from.

Worse symptoms were:-

Tingling now in both hands and feet and is more noticeable. Feels like circulation has been cut off temporarily and is returning.

Buzzing vibration in left foot and right side now also in right foot.

Sense of taste and smell not very good.

Problems with maintaining balance, especially in low light conditions or when eyes closed. Have to leave hall light on at night in order to be able to use toilet. Always bumping into things.

Eyes – sensitivity to light, particularly at night. Blinded by oncoming headlights whilst driving. Causes pain in muscles behind eyes (particularly left eye). No longer drive after dusk if very tired. Some loss of colour from left eye. Itchy, dry eyes. Vision has become much worse over the past few months.

Walking has become more difficult. More of a coordination problem than a pain problem. Walking very slow. Bump into things and overbalancing.

Increasing difficulty with word finding ability, short term memory, concentration, speech slurred when tired. Often get wrong words& temporary dyslexia with words and numbers.

Problems with swallowing when tired. Feels like something is stuck in my throat (particularly when laying down at night). Sometimes feel like something is crawling up my throat which makes me cough.

Pain in neck and top of shoulders is much worse. Neither cocodamol nor paracetamol+ibuprofen help.

Tinnitus is worse and now sometimes in left ear too.

Difficulty with grip – no strength in hands.

Ongoing

Orthostatic intolerance. Cannot remain upright or seated for long without feeling very unwell.

Extreme fatigue following mental or physical exertion. May not be the same day but the next day or sometimes 48 hours later.

Itching. Like insects crawling over my body when I’m in bed. Also intense itching of scalp.

Difficulty hearing/understanding what someone is saying to me when there is background noise.

Bloating.

Continence issues.

Insomnia/too much sleep.

Muscle pain/weakness – burning pain in muscles (particularly arms). Weakness in hands and arms. Poor grip.

Problems with temperature – too cold then too hot.

Sudden jerking of hands when trying to perform fine movements (spooning coffee). Trying to get change out of my purse. Twitching of legs at night sometimes wakes me.

All symptoms made worse with heat or exertion.

Basically, I am not going to get my LP yet (9 months now).

I asked him for a brain and spine (further problems with my walking) MRI with contrast but apparently contrast is only used where there may be a brain tumour and is very toxic stuff and spine at this time is not relevant.

He is going to refer me for an MRI and if it doesn’t show the lesions required to diagnose me (hopefully not the out of date Barkoff criteria he was using for my first MRI) then he will refer me for a LP at Canterbury (he initially suggested London but Canterbury is much closer to me so I mentioned it) and may refer me to the MS specialist there. :smiley:

IApparently my shortness of breath and chest pains etc. and my sense of taste/smell are all to do with my smoking (I smoke 0.5 ounces of tobacco a week (less than one packet of cigarettes a week) and when I gave up for a few months a short while ago, it made no difference).

My severe neck pain is a muscular issue and should be treated with hot/cold packs and my support pillow maybe rather than drugs. His specialises in pain so I’m going to see my GP about this. Hopefully I’ll at least get an xray. I do have a long neck and have had problems with it over the years but would like some resolution with this.

Problems with being blinded by headlights and positioning on the road in the dark were put down to light-sensitivity. I have had this for 8 years now and have been able to drive safely. I don’t think I can do this anynore as I wander on the road.

He asked why I had a problem with standing and sitting and I said that if I was standing or sitting for long I started to feel very ill. I feel sweaty, have a churning feel in my stomach and feel as though I am either going to either throw up or keel over. I feel a very strong need to lie down. Can’t queue at shops or washup etc. Apparently this is not symptomatic of MS, but, I told him, it is very symptomatic of ME, to which he said that ME and MS are completely different. Well, not in my book they’re not.

Sorry guys, very much rambling here but this has screwed up my plans. I thought 9 months for an LP was bad. Hoping Dr Redmand (MS specialist in Canterbury) is good because these 10min packitallins are not good for me at all.

Sorry it was such a long one. BTW, I’ve been ill since 2004 and would really like to get a label and treatment so I can go back to some form of working.

Mags xx

9

Ok. Had my neuro app’t today. I made a big list of new, worse and ongoing symptoms for him to save time (10 minute slot, gogogo).

The new symptoms were:-

Dizzyness. Like the ground is shifting under my feet, even when sitting down.

Shortness of breath with chest pain, can’t seem to get a full breath.

Headaches which I don’t normally suffer from.

Worse symptoms were:-

Tingling now in both hands and feet and is more noticeable. Feels like circulation has been cut off temporarily and is returning.

Buzzing vibration in left foot and right side now also in right foot.

Sense of taste and smell not very good.

Problems with maintaining balance, especially in low light conditions or when eyes closed. Have to leave hall light on at night in order to be able to use toilet. Always bumping into things.

Eyes – sensitivity to light, particularly at night. Blinded by oncoming headlights whilst driving. Causes pain in muscles behind eyes (particularly left eye). No longer drive after dusk if very tired. Some loss of colour from left eye. Itchy, dry eyes. Vision has become much worse over the past few months.

Walking has become more difficult. More of a coordination problem than a pain problem. Walking very slow. Bump into things and overbalancing.

Increasing difficulty with word finding ability, short term memory, concentration, speech slurred when tired. Often get wrong words& temporary dyslexia with words and numbers.

Problems with swallowing when tired. Feels like something is stuck in my throat (particularly when laying down at night). Sometimes feel like something is crawling up my throat which makes me cough.

Pain in neck and top of shoulders is much worse. Neither cocodamol nor paracetamol+ibuprofen help.

Tinnitus is worse and now sometimes in left ear too.

Difficulty with grip – no strength in hands.

Ongoing

Orthostatic intolerance. Cannot remain upright or seated for long without feeling very unwell.

Extreme fatigue following mental or physical exertion. May not be the same day but the next day or sometimes 48 hours later.

Itching. Like insects crawling over my body when I’m in bed. Also intense itching of scalp.

Difficulty hearing/understanding what someone is saying to me when there is background noise.

Bloating.

Continence issues.

Insomnia/too much sleep.

Muscle pain/weakness – burning pain in muscles (particularly arms). Weakness in hands and arms. Poor grip.

Problems with temperature – too cold then too hot.

Sudden jerking of hands when trying to perform fine movements (spooning coffee). Trying to get change out of my purse. Twitching of legs at night sometimes wakes me.

All symptoms made worse with heat or exertion.

Basically, I am not going to get my LP yet (9 months now).

I asked him for a brain and spine (further problems with my walking) MRI with contrast but apparently contrast is only used where there may be a brain tumour and is very toxic stuff and spine at this time is not relevant.

He is going to refer me for an MRI and if it doesn’t show the lesions required to diagnose me (hopefully not the out of date Barkoff criteria he was using for my first MRI) then he will refer me for a LP at Canterbury (he initially suggested London but Canterbury is much closer to me so I mentioned it) and may refer me to the MS specialist there. :smiley:

IApparently my shortness of breath and chest pains etc. and my sense of taste/smell are all to do with my smoking (I smoke 0.5 ounces of tobacco a week (less than one packet of cigarettes a week) and when I gave up for a few months a short while ago, it made no difference).

My severe neck pain is a muscular issue and should be treated with hot/cold packs and my support pillow maybe rather than drugs. His specialises in pain so I’m going to see my GP about this. Hopefully I’ll at least get an xray. I do have a long neck and have had problems with it over the years but would like some resolution with this.

Problems with being blinded by headlights and positioning on the road in the dark were put down to light-sensitivity. I have had this for 8 years now and have been able to drive safely. I don’t think I can do this anynore as I wander on the road.

He asked why I had a problem with standing and sitting and I said that if I was standing or sitting for long I started to feel very ill. I feel sweaty, have a churning feel in my stomach and feel as though I am either going to either throw up or keel over. I feel a very strong need to lie down. Can’t queue at shops or washup etc. Apparently this is not symptomatic of MS, but, I told him, it is very symptomatic of ME, to which he said that ME and MS are completely different. Well, not in my book they’re not.

Sorry guys, very much rambling here but this has screwed up my plans. I thought 9 months for an LP was bad. Hoping Dr Redmand (MS specialist in Canterbury) is good because these 10min packitallins are not good for me at all.

Sorry it was such a long one. BTW, I’ve been ill since 2004 and would really like to get a label and treatment so I can go back to some form of working.

Mags xx

10

I’m not sure if there is a single condition that could explain all of those symptoms, which suggests (to unqualified me at least!) that there is more than one thing going on. Actually, I guess that’s what the neuro is thinking too, as he’s trying to relate different symptoms to different causes.

I guess the trick is going to be identifying which symptoms are neurological and which ones are either a side effect of that or are completely unrelated.

Fingers crossed the MRI resolves things for you and/or gets you the MS specialist referral!

Karen x

11

Thanks Karen.

I’m sorry it was such a long whinge , I was just at the end of my tether with it all and writing all the symptoms down made me feel like such a hypochondriac (which is the way I used to be treated by my GP and work so I guess it caught a nerve there)!

At least I can forget all about it now and get on with stuff until the next letter pops through the letterbox.

Mags xx

12

Sound likje a long list of problems, but doesn’t sound like MS to me, which is perhaps why he hasn’t diagnosed you, regardless of which criteria he uses. ME has many similar symptoms to MS, but as your list is so long and so constant, I’d think unless you had ppms its more likely to ME or something similar.

Waiting for a diagnosis is frustrating, but with regards to getting a job etc, for goodness sake don’t put your life on hold! Having an MS diagnosis is not exactly going to increase your employability is it? Get help/treatment for amny symptoms you are having, and get out there! Apart from possibly getting DMD’s if you get an MS diagnosis, (which in themselves can cause some pretty nasty side eeffects and make you feel pretty rough) you’ll still need to treat the symptoms, but maybe you have your diagnosis already? Perhaps you just need to accept you’ve got M.E., also a horrible, debilitating, VALID and frightening illness, and come to terms wuth that? As they say, be carefull what you wish for…

13

Hi Anonymous.

The only thing I’m wishing for at the moment is a firm diagnosis and some treatment, if it is available. Unfortunately, there isn’t any acceptable regime of treatment for ME, despite the symptoms being very similar (neurological symptoms, lesions etc) to MS so I’m afraid there’s nothing I can do with that at the moment apart from pain meds.

I had a good job which I had to leave three and a half years ago as I was too ill to continue and my health has slowly declined since then, so much as I may want to get out there and look for work, I don’t think an employer is going to be keen on employing someone who is limited to two hours activity on some days (the good ones) with rest breaks in between.

Please don’t think I’m being negative in this. If it was a case of mind over matter and being positive I would have continued to work. It’s taken me eight years to accept my limitations to the extent that I have…

Many thanks,

Mags

14

Sorry, I must have misunderstood you, no offence intended, but when you said you wanted a label and some treatment so you culd get back to work, I was confused as to how that would help? I presume you are laying your hopes on an MS diagnosis in order to get DMD’s? In which case I can see where you’re coming from. But, to play devils advocate here, lets say your neuro is right ( or at least right to be cautious) in not confirming MS. I presume as a professional he is also aware of the difference/similarities between ME/MS, Being pumped full of drugs you dont need could be potentially catastrophic to your health. Regarding treatment/therapy for ME, there is a treatment called the Lightning Process you could try. Controversial, but has extraordinary results for some. A friend of minw who was ill for years, and convinced she had MS eventually agreed to give it a go, and has now got her life back, working full-time, going out in the evenings, holidays etc. She had been virtually housebound, unable to walk, spent most days in bed for years. I think like CBT you perhaps get the best advantage from wanting to be well, rather than wanting a diagnosis, if that makes sense?

If I sound harsh, I’m sorry. I was diagnosed with ME/Chronic Fatigue syndrome many years ago, gave up a successfull career, lost a marriage, and a life to all intents and purposes. I never accepted the diagnosis, as I just thought it was a made up name! I was mortified there wasn’t a more acceptable label for the dreadfull way I was suffering. People were very sceptical about it then, yuppy flu etc, I was convinced it was MS, but there was no evidence of it. I wanted ligitimacy. Well, let me tell you, I’ve got that now. I’ve just been told I have probable PPMS. There’s no treatment for that. Was it that all alomg? Who knows. As I say, be carefull what you wish for…

15

Hi Anonymous, no offence was taken I assure you. :slight_smile: Part of me is just so angry and frustrated that it took six years to convince my doctor that there was actually something physically wrong with me and once I had a positive MRI he didn’t want to see me anymore. Even the best employer in the world isn’t that understanding…

I don’t want to have either ME or MS and I suppose I’m clutching at straws hoping that whatever I have it will be treatable in some way but it keeps me going and gives me hope (delusional?, possibly but helpful nonetheless :-)). I guess that eight years down the line, I still can’t accept that ‘this is it’, although I know how fortunate I am compared to those who become ill over a very short period of time as I’ve had time to adjust.

I can understand your feelings about your ME/CFS diagnosis and I used to feel the same before I realised that ME and CFS were completely different illnesses. ME has been accepted by the World Health Organisation as a neurological condition since 1969, whereas CFS includes fatigue due to depression, athlete overtraining, post viral fatigue etc. Unfortunately, the two are still being lumped together and treated in the same way. Thankfully, there are many support groups for ME sufferers now and hopefully one day there will actually be some research into what causes it. Oh dear, on my soap box again, probably so I don’t have to think of the PPMS elephant (yes, it has crossed my mind).

I’m very sorry about your probable diagnosis. You seem angry about it and you have every right to be, it has taken so much from you. I’m not going to quote platitudes at you as they’re not worth the energy it takes to type them (particularly if you don’t know someone) but please feel free to stay in touch if you need to vent.

Take care,

Mags x

16

Have they said why it is taking 9 months for a LP? Do they think you don’t need it? Mine was in 6 weeks and in the same week I’ve had a VER and will also have a full MRI of brain and spine. Hope you get it sorted.

17

Hi Dextersmum,

Sorry, this is getting a bit long (especially wlth me doubling stuff up! ).

My neuro referred me for one in June when I last saw him. I called in September and was told there was no money in the budget at my hospital. When I called in November, I was told that (luckily) the money had just come through and appts would go out in December. When I called in December I was told I’d hear in January and when I called in February I was told that they no longer had a registrar to do it and my neuro would have to refer me to Kings in London.

Last week he decided that since it had been 18 months since my last MRI he’d send me for another one first and if there was no change then he would referr me on for a LP and to see the MS specialist.

The wheels are turning I guess and I just got a bit fed up with being fobbed off for so long. He said he’d rather not put me through a LP for now (although I’ve read they aren’t so bad these days).

Back to waiting I guess but thanks for the encouragement.

Mags x

18

Have you tried PALS?

19

Hi DM,

Yes, I called them in Feb and then spoke to the neuro’s secretary. He was away for a week and she said she would put a note on his desk asking him to refer me to Kings (original referral was to local hospital) and then nothing until I saw him last week.

I’ll wait until my MRI is done and the results are through now. If there’s no change and the appt. with the MS specialist is a long way off, I might pay to see him privately. If there are more lesions, I’ll push for an appointment asap.

Thanks for the tip though. I shall definitely call them if things are slowing down again. In this game it really does seem to be a case of he who shouts loudest!

Mags xx