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Meningitis LP MRI

I have been having MS symptoms since beginning of August and waiting for a neuro app and an MRI. but on the 5th sept I was taken to hospital with bacterial meningitis, I have just come home on Monday this week. while I was there I had an LP and seemed to have the doctor from hell doing it, after 4 attempts and 2 hours my husband told him to stop and get someone who knows what they are doing!! the results showed meningitis and I was treated for that. while I was in hospital I got my MRI and the neuro doc came to see me. I was so poorly the day he came I didn’t even have the chance to explain to him all my symptoms. He said that I have multiple white spot legions within the white matter. he then argued with the doctor on the ward that I was suffering with severe migraine headache and not meningitis!! he continued to argue with the doctor and the sister on the ward threw him out…

now I feel that the meningitis has tainted my possible dx of ms?? does anyone know what multiple white spot legions in the white matter mean?? I have managed to get my images on disc and have made an appointment to see a neuro doc privately next thurs. after reading lots of posts on here I am scared that I am going to get nowhere but im in agony all the time now and cant walk properly or stand for long periods.
I just feel like curling up in bed and never getting up again!

millie x

Hi Millie.

It does seem to be all a bit of a mess, doesn’t it?! :frowning: The problem is that neurological symptoms are really quite difficult to pin down.

I guess the meningitis must have been right - I’m assuming there’s a straightforward test for this(?), but I really don’t know. I don’t think meningitis can cause white matter lesions that could be confused with MS or migraine though, so there must be something else going on too surely?

Which reminds me - the neuro will have said multiple white spot lesions in the white matter. What this means is that there were some brighter areas (white spots) on your MRI scan images and that these were in the white matter of your brain. The brain has three main types of matter (i.e. “stuff”) that do different things: gray matter, white matter and CSF (cerebral spinal fluid - the stuff the LP tests). Gray matter does the processing and storage. White matter does the communicating between the different bits of gray matter. Lesions are areas that have been damaged.

There are actually quite a lot of things that can cause lesions in the white matter. MS is one. Migraine is another. Telling the difference between these (and meningitis for that matter) depends mainly on size & location of the lesions. Both MS and migraine can cause neurological symptoms, and it’s possible to have have migraine and not have headaches.

If your symptoms started in August and you have had nothing prior to this, it is highly unlikely that you would get a diagnosis of MS. This is because you need to have had more than one attack to be diagnosed with MS. Or have you already got a “possible MS” diagnosis and this is the second episode?

I think you’ve done a really sensible thing and booked yourself a new appointment with a neuro. If you get worse in the meantime, please go to A&E (and take your MRI disc with you, in case they want to see it).

Let us know what happens.

Karen x

Hi Karen and thanks, this is actually my 3rd attack but I have never been to see a neuro doc. I have been trying to write a list of all my symptoms to take with me next week, have a look and see what you think??

1976?? Woke up one morning, couldn’t move my right leg, also very painful. No previous injury or fall. Lasted for about 2 weeks. (I was about 7 yrs old)

1995 Admitted to Royal Gwent Hospital with Bell’s Palsy to right side of face, numbness and weakness in right arm and right leg. Doctors had no idea what was wrong with my arm and leg. Lasted a few weeks, with no permanent damage.

July 2010 Cramp in feet, feels like they have been crushed. Lasted for about two months.

November 2010 on holiday in Cuba, blacked out/fainted.

Jan 2011 Cramp in feet. Leg muscles cramping. Worse when I have been standing or walking for some time. Continues…

July 2011 sudden pain in right eye lasted for 3 days.

August 2011 numbness, pins and needles in right arm, and right leg. Numb sole on right foot. Some tightness around chest, feels like someone is squeezing me and it makes me choke. Some pins and needles in tongue. All continues

Dizziness / poor balance (leads to stumbles): continues, now more frequent.
Weak, heavy right leg, unable to walk far: continues.
Fatigue… continues.

5/8/11 admitted to hospital with meningitis
Following meningitis, some deafness in left ear.

millie

Sounds like you have had a really tough time milli! hope things start to go better for you on Thursday.

I had a bad experience with a LP I had a doctor that had never done one and she she was being watch by another after what felt like a life time i said no more so the other one took over by this time i was really distressed and a nurse told them to stop, i was crying like a baby the stuff they use to numb you doesn’t do much to numb. the next day my mum came to see me and i told her about the LP so she looked and said OMG you back is black and blue. I also new after lunch that i was going to have to have another, another doctor came and said don’t worry i will be kind he did do it pretty quickly but my back was so tender i still had to have a nurse to hold onto and cried just like a baby again i will never have another not ever

tracy x

Aw tracy poor you, sounds like you went through hell hun… the doc who tried to do mine did not use any pain relief and had no bedside manor at all!! I am an ITU nurse and I assist in LP’s where I work and they should be painless and only take about 10mins. the second doc that did mine was an anesthetist, gave me plenty of pain relief and it was painless and quick but my back is still black and blue now…
I didn’t ask about the ms thing that they find in an LP though so not sure if I might have to have another one??

take care

millie x

well i will feel for you millie!
they told me it would be ok just a bad experience i suppose but hope no one ever has to go through it. Lucy the girl in the bed next to me had to go through the same thing as well she had two she had to listen to me crying and then i did her.

tracy xx

millie wrote:
Hi Karen and thanks, this is actually my 3rd attack but I have never been to see a neuro doc. I have been trying to write a list of all my symptoms to take with me next week, have a look and see what you think??

1976?? Woke up one morning, couldn’t move my right leg, also very painful. No previous injury or fall. Lasted for about 2 weeks. (I was about 7 yrs old)

1995 Admitted to Royal Gwent Hospital with Bell’s Palsy to right side of face, numbness and weakness in right arm and right leg. Doctors had no idea what was wrong with my arm and leg. Lasted a few weeks, with no permanent damage.

July 2010 Cramp in feet, feels like they have been crushed. Lasted for about two months.

November 2010 on holiday in Cuba, blacked out/fainted.

Jan 2011 Cramp in feet. Leg muscles cramping. Worse when I have been standing or walking for some time. Continues…

July 2011 sudden pain in right eye lasted for 3 days.

August 2011 numbness, pins and needles in right arm, and right leg. Numb sole on right foot. Some tightness around chest, feels like someone is squeezing me and it makes me choke. Some pins and needles in tongue. All continues

Dizziness / poor balance (leads to stumbles): continues, now more frequent.
Weak, heavy right leg, unable to walk far: continues.
Fatigue… continues.

5/8/11 admitted to hospital with meningitis
Following meningitis, some deafness in left ear.

millie

That looks succinct and comprehensive (it’s clearly the nurse in you coming out!). The latest McDonald criteria state that the patient’s own self reported previous episodes should be taken into consideration, but that objective confirmation should be sought (e.g. VEPs to see if your eye pain was caused by demyelination) for at least one of the self-reported episodes.

To be precise: “The Panel considered again what constitutes an attack (relapse, exacerbation) and defined this as patient-reported symptoms or objectively observed signs typical of an acute inflammatory demyelinating event in the CNS, current or historical, with duration of at least 24 hours, in the absence of fever or infection. Although a new attack should be documented by contemporaneous neurological examination, in the appropriate context, some historical events with symptoms and evolution characteristic for MS, but for which no objective neurological findings are documented, can provide reasonable evidence of a prior demyelinating event. Reports of paroxysmal symptoms (historical or current) should, however, consist of multiple episodes occurring over not less than 24 hours.There was consensus among the Panel members that before a definite diagnosis of MS can be made, at least 1 attack must be corroborated by findings on neurological examination, visual evoked potential (VEP) response in patients reporting prior visual disturbance, or MRI consistent with demyelination in the area of the CNS implicated in the historical report of neurological symptoms.” (Polman et al, 2011, p293).

Are you getting meds for your symptoms? Baclofen can be great for cramp and “hug” and a neuropathic painkiller would help the pins & needles. Stemetil is often used for dizziness, but there are other meds for it too. Sorry if I’m teaching granny to suck eggs here (very strange saying!) - I appreciate that you will know a whole lot more about meds than me!

Karen x

Thanks karen, I am a children’s nurse so i’m really not familiar with any of this!! your help is really good thanks…
what do you mean by ‘hug’ ? the only meds I take is Amitriptyline 30mg day. I thought it might be this causing the dizziness so I stopped taking them for a few days but the only thing that happened is the pins and needles came back in my arm and leg… the doctor wont give me baclofen he says that if the neuro doc prescribes it then thats ok… the cramps in my feet and legs are awful some days, I take codydramol for it but it doesn’t help much and just makes me constipated!! I just hope by seeing the neuro doc privately I might get somewhere, at least I hope so as its costing £210…

millie x

Why on earth won’t your GP prescribe baclofen?!?!?! You are suffering from painful cramps - that’s what baclofen treats! Grrrrrrr! Some doctors make me really MAD! There is absolutely nothing to stop your GP from prescribing baclofen other than his/her own reluctance. They are allowed!

Make sure and don’t leave that appointment without the neuro either prescribing or promising to tell your GP to prescribe what you need. I’m sure you know how to deal with consultants - time to use your skills for your own benefit :slight_smile: (Thinking about it, I bet paediatric consultants are a bit more approachable than most neuros. So, for what it’s worth, I find the way to get the most out of a neuro is to sort of pretend we’re not talking about me but as if I’m a case we’re discussing - be prepared and keep it very objective and calm, but firm!)

The MS “hug” is a feeling of tightness around the torso, usually the ribs, but it can be the back or abdomen. Basically it is caused by the muscles contracting / cramping and it can make it hard to breathe. Sounds like it could be your “Some tightness around chest, feels like someone is squeezing me”? It’s also treated with muscle relaxants like baclofen I think.

Kx

Oh thanks that must be what it is then, I went to the doctor a few months ago about may june as I was having chest pain, thought I was having a heart attack or something but she just kind of shrugged her shoulders and said it was all in the muscles!! it makes me have palpitations for about 10 -15 mins after…

sometimes though I can be lying on the sofa in such a comfy position, with no pain at all, then I think to myself ‘am I imagining all this, should I be in pain all the time?’’ I don’t no cos I get up to go to the loo and its all back, my legs are crap when they have been rested for a long time, especially when I get up first thing in the morning… is this usual for ms??

millie xx

Unfortunately, there isn’t such a thing as “usual” with MS. It is massively variable between different people, but can also be variable between different days (or even times of the day) for the same person. Over time we do kind of get to learn what is and what isn’t usual for ourselves, but it can take a while.

Kx

Karen you seem to be good at reading and understanding the MRI reports, im going to type mine out and see what you think…

There are a few small subcortical T2 and FLAIR hyperintensities are seen in the white matter of both cerebral hemispheres.
otherwise the ventricular system and extra-axial CSF spaces appear normal. no other focal or diffuse abnormality seen in the cerebral, cerebellum or brain stem. No focal intracranial mass, large vessel territory infarction or definite features of demyelination seen.

No focal abnormality identified in the spinal cord. the spinal cord is normal in calibre. the central canal is capacious. the cervical intervertebral discs, vertebal bodies, appendages and their aligment appear satisfactory. no focal abnormality see.

seems to me that there is nothing wrong?? but all the symptoms I have are very real…

millie xx

millie wrote:
Karen you seem to be good at reading and understanding the MRI reports, im going to type mine out and see what you think..

There are a few small subcortical T2 and FLAIR hyperintensities are seen in the white matter of both cerebral hemispheres.
otherwise the ventricular system and extra-axial CSF spaces appear normal. no other focal or diffuse abnormality seen in the cerebral, cerebellum or brain stem. No focal intracranial mass, large vessel territory infarction or definite features of demyelination seen.

No focal abnormality identified in the spinal cord. the spinal cord is normal in calibre. the central canal is capacious. the cervical intervertebral discs, vertebal bodies, appendages and their aligment appear satisfactory. no focal abnormality see.

seems to me that there is nothing wrong?? but all the symptoms I have are very real…

millie xx

Hi Millie.

The only abnormality is the T2/FLAIR hyperintensities. It would be helpful to know how many “a few” are, and exactly what size “small” is though! The lack of periventricular lesions (i.e. hyperintensities near the ventricles, the “lakes” of CSF in the brain) does suggest that it’s not MS, but that’s not 100% by any means. (For example, the quality of the MRI scans makes a big difference to what is visible, and some people seem to develop visible lesions slower than others.)

Very small hyperintensities in the white matter could be vitamin B12 deficiency or migraine perhaps? Or your problems could be caused by someting completely different and these lesions are a pure coincidence. For example, some people with neuromuscular conditions or genetic conditions can occasionally have non-specific brain lesions.

Not sure how they fit with your symptoms though… Let’s hope the neuro can shed some light!

Hth.

Karen x

I hope so, that report was written within 3 hours of me having the MRI, when I was in hospital, im not sure about it. I have researched the consultant and he seems to be good and a good reputation but he didn’t give me the time of day!! I have my images on disc and I was thinking of taking them with me to the neuro on thurs but not the report, lets see what he says about the images. I am going to ask him to go through it with me and show me the legions and explain…

I just think that if he already has the report in his hand, he will prob say the same!! I dont trust these doctors as they all stick together…

I guess I just want to know whats causing all this pain!!

millie x