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Does a clear lumbar puncture result rule out MS/
23 Jan 2012 at 1:32AM
Does a clear lumbar puncture result rule out MS/
Hello there, I wonder if anyone can help
my recent history past 9 months is as follows: opthamologist says I have optic neuritis, sends me for an MRI which shows lesions in white matter, sent to neurologist, who did an examination and asked me questions, said I may have MS. Several further tests carried out including a lumbar puncture, MRI neck area/brain stem and evoked potentials and then I got to see him again 4 month later.
He says that as the lumbar puncture is clear I don’t have MS and how do I feel about a diagnosis of Chronic Fatigue Syndrome? I asked about the results of the evoked potentials and he said that some minor slowing but seemed abit vague and evasive on this one. As for the lesions we will have to keep an eye on them he says but they could be age related as I am on borderline with my age (I am 42). Is this true or am I being told a load of cobblers here I wonder? I asked about whether we could tell when the lesions were from and he said no, is this true or does it depend on whether standard MRI was used or can you tell from the contrast MRI?
I am left feeling abit confused as after doing a bit of research on net quite afew people seem to be diagnosed with MS without a lumbar puncture or as wikipedia and some MS websites say, 5-10% of people with MS won’t have a bands in the lumbar puncture test, well not according to the neurologist I have seen that’s for sure. So does anyone know the answer to that one, does a clear lumbar puncture result rule out MS? One thing I have learned is, it isn’t easy to diagose is it! And I get the feeling the neurologist is abit unsure and is preferring to scurry to the safety of the CFS/ME diagnosis. Interestingly when I had to go into the hospital for another test a nerve conduction study I got chatting to the nurse and told her about some of this and she said “not to go down that route” (the CFS/ME one) as most doctors and medical people will think it is all in your head.
My symptoms of which there are quite afew are:
exercise intolerance/weakness(can walk about 200-300 metres on average),
concentration tasks(can take in information for about 20-30 mins then mind starts goes blank and have trouble commicating, finding words, slow right down etc)
muscle problems: spasms in legs arms back and chest throat area, cramps,rls, tingles, very tight leg and arm and back and neck muscles that won’t release resulting in muscle injuries past 6 months that aren’t healing much to frustration of the physio, neck pain from trying to sit up hold my head up, trouble sitting upright standing upright for long periods
Other symptoms are: heat intolerance, prickly itchy sensations that when go to scratch feel bit numb, tinnitus, vision problems, urination frequency and literaly unable to hold it at times, electric shock type sensations either just head or full body when lieing down but only time to time( start in head or back, similar to one I experienced when having the lumbar puncture done done that made my left leg jolt and the neurologist said he had hit a nerve probably).
I should mention that I have Addison’s/hypoadrenalism and have to take cortisol and fludrocortisone for that and this may not being treated adequately and further tests ongoing as to whether is due to adrenal gland failure (primary Addison’s) or secondary due pituitary problems which could mean other hormone deficiencies/excesses. So I am not a simple case and this may expain some or all of my symptoms maybe/hopefully.
I have been given gabapentin and baclofen by my gp to help muscle cramp problems but isn’t helping much other than to help me sleep, which is something I guess.
Well there’s all the info, is this true what the neurologist says about a clear lumbar puncture ruling out ms and lesions could be age related or should I seek a second opinion and/or try and get a newer contrast higher field MRI that might make more sense of those lesions.
Thanks for reading this anyone it is alot I know, has taken me hours…
23 Jan 2012 at 2:14AM
It is rather late, so I’m sorry not to reply with the same detail you put into it.
But just quickly, no, your research is correct. A lumbar puncture cannot prove OR disprove MS, as a small number of people with MS will have a normal LP, whilst a few healthy people will have false positives, as well!
A LP, IF it had proved positive, would have been very supportive of an MS diagnosis, but a negative one cannot rule it out.
As you seem to have had two out of three tests revealing some abnormality (lesions plus some signal retardation on the VEPs), I think it’s premature to be ruling out MS (or other neurological disoder).
I must say, I’ve never heard of the patient being asked to “vote” on whether they accept a diagnosis or not! Surely, it’s for them to tell us the correct diagnosis, not to offer different ones, and try to find one we “like”.
I’m afraid my reaction would be no, I’m not happy with that as a diagnosis. I’d rather stay undiagnosed, pending further evidence, than accept a diagnosis that doesn’t seem to deliver any answers.
And I’m never very happy with “ageing” as an explanation of brain lesions. You’re hardly ancient! I’m older than you, and nobody ever tried to pass off my brain lesions as a natural part of ageing. I’m guessing maybe they were more pronounced or something, but even so…
An MRI with contrast can pick up which lesions (if any) are new and “active” at the moment, but can’t detect how long older ones may have been there. So it would only be useful to check for present activity, but not to reveal anything about history.
I’d be inclined to seek a second opinion, if I were you. Sounds like your neuro is probably not an MS specialist. Can you see one that is?
As an aside, whole chapter I’ve left out is I don’t know what your Addison’s etc. might throw into the mix. I believe some endocrine disorders can potentially cause brain lesions, but it’s really not something I know a lot about.
23 Jan 2012 at 3:18AM
Thanks ever so much for reading all this and getting back to me on this one Tina, it is late.
Your reply has helped clear some of my confusion.
My reply to the neurologist’s suggestion about how do I feel about a diagnosis of CFS/ME was similar to the one you would have given above and that I would rather he said he didn’t know and leave it at that as it’s honest,and anyway isn’t it a bit of a cop out, at which his defense was no it is not a cop out it is an officially recognised medical condition and if we put down we don’t know then you will have all sorts of problems regarding obtaining medicals support, benefits, legal things etc, that is why we do it, it is a official box that can be ticked.
I have given it some thought since, and when I see him next, and I’m not sure why I am having to go and see him next as I don’t think it is going to help me much rather stress me out, do I have to go and see him again? I am not prepared to accept the diagnosis of CFS and would rather he just kept it as is at present which is “multiple symptoms cause unkown” add to this “pending further investigations”(if I went into the CFS dustbin I don’t suppose there would be any further investigations anyway…). It is more honest and says it how it is, why can’t medical support and benefit agencies work from that? perhaps they can’t and they do need me in a box they can tick, we shall see.
Thanks for your help, Tim
23 Jan 2012 at 11:21AM
You should absolutely NOT be happy with a CFS diagnosis.
As Tina has said, you are right in that a clear LP does not rule out MS.
If I were you, I would want to see the radiologist’s report. I would want to know where and what the lesions looked like. There is a broad rule of thumb of one lesion per decade for aging. Exactly how many lesions do you have? If it is more than four, then they are on sticky ground. (Even four is sticky ground - age-related lesions really don’t tend to happen in the earlier decades and, according to the new McDonald diagnostic criteria, you only need two in the right places for a diagnosis of MS!)
I would want to know exactly what he meant by “minor” slowing of the EPs - was it significant or not? (If these were VEPs, then it doesn’t really matter - you have a diagnosis of ON, so it’s just confirmation of that. If they were a different form of EPs, and therefore additional information, then it’s important.)
I would also want to know if I had been tested for AMN - your Addison’s/hypoadrenalism is an indicator and AMN can cause lesions and often causes optic neuritis. (There is a blood test that is reasonably, but not wholly, reliable. Your GP can probably arrange it.) Late-onset AMN usually presents in the 20s/30s so you are a bit old for it, but I would want to be tested anyway, if I were you.
Different conditions tend to cause lesions that look different and/or are in a different place. It can sometimes be hard to distinguish though. In MS, lesions tend to have nice clean boundaries, be ovoid in shape (or sometimes U-shaped if next to the cortex) and have a preference to lie near the ventricles. So, for example, someone with diffuse lesions found only in the frontal lobe almost certainly wouldn’t have MS (and it could probably be safely ruled out if their LP was negative).
Gadolinium is used as a contrast in MRI because it cannot normally pass the blood-brain barrier (bbb). When there is active inflammation (i.e. a current attack), the bbb is breached. In this case, the gadolinium passes through into the brain and shows up as bright white on a type of image that shouldn’t have any bright white bits on it. So, contrast only shows up current activity; old lesions don’t get seen any better with it. Because contrast shows up current breaches in the bbb, it is good at showing up lesions that are too small at the moment for the non-contrast scans.
Of course, this all assumes that the scanner and the settings used are decent! It is very well proven that stronger scanners show up more lesions. It is also very well proven that thinner slices show up more lesions. Neuros don’t tend to care very much about this though As my neuro told me, “Oh, we are only interested in gross changes!” (at which point I wanted to slap him!!!).
So, what to do?! If I were you, I would write to my neuro, asking the above questions. I wouldn’t wait for a new appointment. Also, have you had a spinal MRI scan? If you haven’t, then you certainly should! (Cervical AND thoraccic.)
What does this neurologist specialise in? If it is something like Parkinson’s or epilepsy or headache or anything that isn’t like MS or demyelinating conditions, then I would definitely ask for a second opinion.
23 Jan 2012 at 11:26AM
Morning Tim (again!)
My understanding is that benefits etc. depend on evidence of how you are affected, not on what the name of it is!
So as long as you have real problems, and your consultant can vouch for that, it shouldn’t matter that they are not (yet) attributable to a named condition.
I think to diagnose someone with something “so they will find it easier to claim benefits”, is completely the wrong reasoning, even if it were true (which I’m not convinced it is).
He should only be diagnosing you with CFS/ME if he’s confident that’s what it actually is. Not for any “administrative” reason - even if the theory is that this would be to your advantage.
The fact he’s asking you how you’d feel about this diagnosis makes me think it isn’t based on compelling evidence. If the evidence was there, he’d be telling you what the diagnosis is, not trying one for size.
It’s quite rare I say this, because usually I say things like: “Maybe the consultant just has an unfortunate manner? Stick with it, and see what happens.”
But on this occasion, I really think you’d be best off returning to your GP and asking for a second opinion (which is your right).
Your diagnosis should be based on objective evidence, and professional judgement. Not on: “This will make it easier for you to claim benefits”.
24 Jan 2012 at 11:30AM
I am only at the start of my journey and awaiting to see a neurologist but I just wanted to say hello and that I also have primary Addison’s and hypothyroidisim (as well as rheumatoid arthritis). I take 30mg of hydrocortisone for the Addison’s.
I personally would want a second opinion. A supposed expert asking you how you felt about a diagnosis in that way as if to say, give it a name and the patient will go sort of thing, really doesnt seem that professional and I am sure you still have lots of questions etc that you need answered.
Good luck with your quest for a diagnosis.
26 Jan 2012 at 2:19AM
Thankyou everyone for all your replies, it is very much appreciated I can tell you. Sorry it’s taken me a while to read your messages and get back to you, been a bit too caput to do everything out past few days.
Blimey, there is a a bit to take in. Best thing is though you are all giving me a bit more faith in my convictions and I should stand by what I think on this one i.e. not happy with a CFS diagnosis.
So my plan is to find out more about that Mri scan I had, probably see neurologist again soon as I’ve got some questions for him…, and then try and get a 2nd opinion if necessary, I presume through my GP? Or I could write to the neurologist and ask him the questions that way as you suggested Karen, depending on how long it will be to the next apt. I have one more test for nerve conduction studies on 31st Janunary and then I would expect to be seeing him afew weeks after that mid to end february I guess. I will let you know how I get on.
In reply to your message Karen, yes I have had the spinal MRI certainly the neck area/brain stem one which I presume was clear,haven’t heard anything. Just one question though what is AMN?
Thanks ever so much for all your help.
26 Jan 2012 at 1:38PM
AMN is adrenomyeloneuropathy. It’s a rare X-linked genetic disorder, which basically means that it’s carried via the mother’s side. You can find out more here: http://www.amnhelp.com/
It probably isn’t AMN that you’ve got though. Addison’s/hypoadrenalism happen without AMN more often than they happen with it!
14 Jul 2012 at 2:08PM
hello,can anyone can help me.my head is battered,literally!!
basically things are very similar for me.for years i’ve had various incidents of ill health which i didn’t connect.first i can think of about 5 years ago when my daughter thought i’d had a stroke as felt unwell and couldnt speak.was ill for a few days.put down as a virus.acute symptoms settled after 48 hours.
2 years ago.fainted at work.had felt unwell prior for a few days.found it difficult to speak.taken to a@e put down as stress.fatigued and off work for a month.
about a year ago could hardly walk on holiday right leg/calf painful.on return checked for dvt.d dimer was raised but no clot found.really bad respitiory problems after.off work for another month.extreme fatigue.about same time needed glasses long distance which seemed to happen over night.
december.felt unwell when driving to work.fuzzy eyesight,double vision,vertigo type.stopped at a garage for help.could hardly speak was brought home.bed for a couple of days.left feeling weak and fatigued.
went back to opticians.one eye had deterioated in this short period.no longer just needed for driving and tv.need all the time.
i should add at this time that i have had massive amounts of stress over the last 10 years.more than most and everything was always being put down as stress.i am a counsellor,get supervision and am nearly counsellod to death!!
april 2012.pains started in legs.calves felt heavy,painful.felt they needed rubbing all the time.calves felt like they were swoleen but werent.felt like lead.felt like legs weren’t my own.at worst extreme difficulty getting upstairs.had to hold ontpo banister,wall.balance problems.if something on floor didnt dare bend for fear of falling.if toy on floor had to think about how to get round it.worse in afternoon.almost unmanageable by tea time.extreme fatigue.had to lift legs morning and night to make them move.difficulty dressing,drying hair etc.took longer.simple things taking twice as long.twice the effort.felt like words werent making sense.became a bit teary and frustrated.numbness in toes.at one point couldnt see for a couple of hours.blurry vision after.
(difficulty fastening buttons and extreme tiredness since xmas)eg managing to work until april but literally laying on couch after work and sleeping.sleeping more than ever.had always been a morning person but found it difficult to get up mornings.felt like couldnt think properley.poor concentration.having to think before i spoke.slow response.
referred to neurologist.had emg.normal.referred for all other tests but doubted it was ms.
again got a respiatory problem.felt like i wasnt getting enough air.ended up email@example.com anxiety.stats were good.no sign of infection.sent home tpo await further tests.ended up with really bad cough.became urine incontinent.i had to wear nappies.6 at night.did everything to ease this.emptied bladder little caffeine.it was horrendous.constant leakage.blurry vision,double vision.
got oral steroids 5 days 16mg a day.improved for a couple of weeks.but still heavy and tired legs and fatigue.
consultant rang me to say had found lesions on my brain but nothing life threatning and would get me in for tests asap.arranged further mri of lower spine as no lesions had shown on upper spine.(end of july)
mid june.started to become extremely tired.legs started to feel worse.an incident of double blurry vision again.couldnt function for a couple of hours.pins and needles in hands several times.coming and going.extreme tiredness.struggled at work to the point that i was sent home.fell asleep at work…balance declined alarmingly.legs became weaker and weaker resistance to movement.had to concentrate to lift them especially the right.tripped a couple of times.two incidents of falling.legs giving way.hands started getting worse.difficulty with writing,buttons bottle tops impossible.uphill was a felt like mount everest and the stairs the himilayas.
now could not get upstairs unaided particularly later in day.was not left alone from then on.24 hour care with me.then became totally house bound and mainly bed bound due to inability to climb stairs and chronic fatigue.brushing teeth wore me out.friends helped bath me.at times couldnt use hands so weak.uncontrollable leg spasms.legs shaking,tremoring.
finally spoke to consultant after a week.got me in as a day case 3 days of iv steroids.lumbar puncture done.(i was asleep during it as so tired)walking from hospital entrance to ward wore me out.
day 2 of steroids no improvement.but lovely steroid flush!morning fatigue apparent by now.
day 3 of steroids.worst night ever.had to be carried to bed,became very upset.couldnt hold a glass to drink from.
complete bed rest.slurry words.slow response.like i had a stutter.
2 days after completion of steroids.woke with numb arm.in particular my right side was weaker.leg and arm.head felt fuzzy.like it was swimming.felt like i had my glasses on head but didnt.kept going to move them.
fainted twice.once sitting up.blood pressure had dropped so dramatically.had 3 nurses with me.even lips were white.taken to a and e due to fainting and blood oressure,difficulty in speaking.falling asleep.drowsy.nhs direct sent ambulance presumably incase of stroke.
was very irratable with doctors as having to repeat history.luckily my daughter was with me who is a nurse.doctor in a@e said thought i had ms.did all appropriate tests obs returned to normal.(possible a reaction to steroids as i was given no advice)
next morning woke with pins and needles arm numb.and leg.face numb.right side.
complete rest apart from toliet.
next day started feeling weaker and weaker.by 1pm lost use of right side completely.had to be dragged.couldnt walk at all.put to bed.had to be carried to the toilet.
following days /2 weeks.complete fatigue.total bed rest couldnt function at all.speech,slow response having to think when speaking.speaking slower.
appt at neurologist.wheelchair bound.he then told me lumbar puncture was negative and he thinks this is all stress related.i am furious as is my gp.i have to say that this is the least stressfull year i have had in 10 years.his suggestion of counselling i laughed at.have never jheard of counselling on how to walk.on neurologist had said the lesions were in keeping with possible demyelination.this consultant said they were none specific.we have seen them and there are 3-4 lesions.
he has disharged me to my furious gp who agrees that if stress was ever going to affect me it would have been long before now.i lost my son 4 years ago.and that she had never heard of stress making people not walk.she believes early stages of ms or possible me.
waiting evoked potential results and lowere lumbar puncture mri.
last few days.mobility has improved.less lethargic but heavy legs .numbness is less on right.still exhauseted and cant function.surely this is a clear ms relapse.please help advice.