Hi Can anyone please explain what this means for me ? The report from my neuro states “fresh onset of a brain stem lesion on the recent scan although quite a lot of the other white matter disease is relatively non specific and I think, goes back a decade” It also mentions “right side trigeminal numbness and problems with sensation” “Right INO”, " jerky torsional nystagmus" , “asymmetrical reflexes being brisker on the right than the left with an up going plantar”, “normal lower cranial nerves”, " neurogenic continence" and “jittery delivery of power” Any translation would be very much appreciated Thanks
The brain has three main parts: the cerebrum (the big bit at the top that most people think of as the brain), the cerebellum (the roundish, wrinkly part that lies underneath the back of the cerebrum) and the brain stem (that lies in front of the cerebellum and that becomes the spinal cord).
The brain stem is a very “old” part of the brain and controls lots of basic functions like breathing, sleeping, swallowing, etc. A lot of the “cranial nerves” terminate in the brain stem. These control things like eye movements and sensation and movement in the face and mouth. So a lesion in the brain stem can cause all sorts of symptoms - exactly what depends on where the lesion is.
“White matter disease” refers to changes in the white matter of the brain. (See Tricky123’s “consultant letter” for more info on white matter.) It seems that you have had something going on for quite a while (it’s possible to sometimes tell how old lesions are by the way they look, but I would guess that you had something in your medical records that might give a clue to the “goes back a decade” conclusion?). “Non specific” means exactly that: not specific to any particular condition. A lot of white matter lesions are non specific and it’s only when the distribution matches particular conditions normal patterns that the radiologist can have a stab at what’s causing them. (Brain stem lesions are often found in MS.)
“Right sided trigeminal numbness” refers to your face. The trigeminal nerve is a cranial nerve. It supplies sensation and movement to the face, mouth and tongue. I don’t know if the “problems with sensation” is related to your face as well?
“Right INO” means internuclear ophthalmoplegia in your right eye. This is when the muscles don’t work properly in the eye leading to dizziness and double vision - basically the right eye doesn’t move properly when you try and look left. Eye movements are controlled by cranial nerves so the brain stem is important here again.
“Jerky nystagmus” means that your eye shakes / jerks rather than moves smoothly. I’m not too clear on the “torsional” bit, but I think it means when you need to move your eyes in arcs / circles rather than in straight lines. Nystagmus can be a sign of a cerebellar lesion, but it can happen along with INO.
“asymmetric reflexes” just means that they weren’t the same on the left as they were on the right. (They should be, pretty much.)
“upgoing plantar” is a positive Babinski’s. It’s when someone’s big toe points up rather than down when the sole of the foot is scraped. It suggests a problem with the “upper motor neuron” which is the pathway between the brain and the nerves that tell muscles when to contract/relax.
“normal lower cranial nerves” meant that there was no sign of a problem with the cranial nerves that terminate lower in the brain stem. A quick google will give you an idea about them.
“neurogenic continence” means that you have some continence issues and they are neuropathic.
“jittery delivery of power” means that when you pushed against the neuro’s hand/arm or resisted him/her pushing you, your muscles didn’t respond smoothly. I think this is another upper motor neuron thing.
Gosh !! Thanks Karen. The difference between this and the first neuro’s report is astonishing. I don’t know if you remember but “purely functional” was used a lot !! Interesting that he has cc that first neuro into this report !!
I’m no where near as on the ball as Karen but I’ll explain what I can for you.
- Fresh onset brain stem lesion seems to suggest a new lesion (though I’ve never heard the word fresh used in this context before). The brainstem is the last bit of the brain that connects to the spinal cord.
“quite a lot of the other white matter disease is relatively non specific and I think, goes back a decade” this seems to suggest you have some non-specific lesions that are old.
“Right sided trigeminal numbness and sensation problems” - the trigeminal nerve is the nerve that supplies sensation to the face, so it suggests you have some R facial numbness and sensation issues.
R INO - this suggests your R eye can’t move towards your nose when you look towards your L. Jerky torsional nystagmus - your eyes are movingin a jerky twisting manner.
Neurogenic continence - suggests some form of neurogenic bladder issues.
Overall the brainstem lesion could be whats caused the R INO and your trigeminal nerve issue depending on where the lesion is of course as both the 5th nerve (trigeminal) and structure that would cause the R INO (which is like a mini motorway that passes info on how the eyes move) start at the brainstem.
Remember I’m not an expert but HTH
ps: sorry about the font don’t know what happened
Haha - Karen beat me to it! Her explanation is much better than mine!
Thanks Reemz. I am absolutely delighted (if you can be !!) with the report because of the awful experience I had with the first neuro. FWIW, after a peculiar health episode 10 years ago, I had an MRI and lumbar puncture which I was told at the time showed no problems, I was sent to see a psychiatrist and told by a neuro that it was stress related and asked if I was “imagining” the episode so that I could take sick leave.
I can completely understand. I don’t have an official diagnosis as yet but MS is the most likely as everything else obvious has been ruled out. My first neuro was terrible too and told me just to get on with it when I was struggling with my symptoms and almost did insinuate it was me. It lost faith completely - so I can understand it’s a relief to have a neuro on you side and a relief to finally feel like you have answers.
I too would be “delighted” in that I was diagnoses 30+ yrs ago then my gp kept saying it was misdiagnosis…that has gone on and on and I have no neuro no ms nurse and no likelyhood of a referal to neuro again…I am too old to bother with is how I feel.
I asked my gp if some new symptoms might indicate that ms was becoming active again and his reply was
"what does it matter what we call it " I feel that was a slap in the face because of my age ( retired )
After self referal to continence service I was given urodynamics tests and other tests which consultant reported as neurogenic bladder and bowel…gp then said " this is the ms of course" I was lost for words and just did not bother to try to say what I felt at that time.
Now having thought about it a lot I want to challenge gp and insist on neuro referal but then again I do not want to lose my drivers licence and so I have kept quiet so far.
My gp did say a couple of years back he was worried about me driving because of all my symptoms and I begged him not to take away my one bit of independance…promised him I only drive on good days and we never spoke of it again.
Oh my what a mess this is, I know I should get on a neuro path, I know I should report ms to insurance and dvla but I am in denial and feel desperate … I need to know my car is there for personal reasons…I will go totally crazy if I can,t drive. This is only a short version of my issues.
Goodness anon!! You sound like your being blackmailed by your gp. It’s down to the DVLA to decide based on the form you fill in. Many people with MS drive. If you feel your truly safe driving then the chances are, you will be fine. Stuff your idiotic gp and insist on Neuro referral if that’s what you want. Neuro would also be better placed to comment on your driving abilities. Good luck x
Anon, if my GP treated me like that, I’d ditch him and find another. GPs are not qualified to diagnose MS or to decide that a diagnosis of MS is wrong. If you’ve been diagnosed with MS you should have access to an MS nurse - I’ve only spoken to mine once but I have her contact details, which gives me peace of mind that the support is there if I need it.
I now have a 3 year driving licence because of MS, but my neuro said when I last saw him that he is happy for me to continue driving. There may come a day when I am no longer safe to drive but that’s in the “deal with it when it happens” category. If you have been diagnosed with MS by a neuro, you have to tell DVLA (you are breaking the law if you don’t).
First things first: consider changing GP, and push for a referral to a neuro and the MS nurse. Good luck.
i had a gp that admitted to me that he didnt tell his patients if they had ms,he thought that they would get worse if he told them,and that it was the norm for drs to do this,i couldnt believe what i was hearing,but found out that it was true,he was not the only gp to think like that.
i would push for some answers.
How did you find out if it was true? You would have had to do a big questionnaire. I’m sorry anon 2 but I struggle to believe what you’ve said…no disrespect. It’s not the norm.