Last reply 2 years ago
Brain stem

Hi everyone! Has anyone had or have a brain stem lesion? My letter from the neuro states that I have small white scattered matter including one on the brain stem. I know that this can be troublesom and I am trying to link it with any symptoms I have already had.

• vertigo (last year)
• internuclear ophthalmoplegia (eye problem recent)
• l’hermettes (on and off in lower back)
• sensitive fingers (resolved now)
• arm and leg vibrations (seem to be resolved)

If anyone could help and put my mind at ease that would be great x

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stumbler
3 years ago

@hollylb10 , I was in two minds whether to post this article from the respected team at Barts. But, forearmed is forewarned :-

http://multiple-sclerosis-research.blogspot.com/2014/09/clinicspeak-predicting-brain-stem.html


hollylb10
3 years ago

I have read this before…I do not know where the lesion is positioned but hopefully will find out in a few months when I get to meet the specialist! I will remain positive but it is always in the back of my mind 🙁


Anonymous
3 years ago

holly,that is a great pun! ‘always in back of mind’ I am same as you-been told i got loads but waiting to find out the specifics…hang in there!!


joojoo
3 years ago

@hollylb10 , those symptoms seem consistent with brainstem lesions. One of my first lesions 10 years ago was in my pons, the other was in my spine (c5/c6). I had very similar symptoms to your descriptions, and it took a few weeks to get back to normal function, balance & use of my limbs, but I recovered completely. L’Hermitte’s stayed with me for years, but that’s now gone, too.
For 10 years I was symptom free, and have had only one relapse since, which was completely different – optic neuritis!
My last MRI showed much smaller patches where the old lesions were, which is v reassuring.
Try not to project a more severe prognosis just because you have a current lesion on your brain stem. It might not happen there again!


hollylb10
3 years ago

Thank you, I have had a bit of a breakdown about it after reading so many negative things but you have reassured me that I can still be positve 🙂 thank you


Anonymous
3 years ago

My first and only relapse to date was brainstem related. I had vertigo, double vision, nystagmus and INO. That was over two years ago and I made a near full recovery. No changes in that area on MRI since and no new / ongoing symptoms. I don’t think my brainstem can take too many hits like that though hence by decision to get on Lemtrada and get the disease under control asap.


hollylb10
3 years ago

H Sandwich, I hope to be able to have Lemtrada….I will have to see what my specialist says as I have not had any meds yet!


hollylb10
3 years ago

Just finished my 2nd 3.5k run of the week so I’m doing great so far and hope it stays this way! I will keep fighting this horrible MonSter 😉


pottypete
3 years ago

Not a pleasant read. My first lesion was in the brain stem. Still here though.


klouise
3 years ago

I have had one attack, with the most significant lesion in the brain stem (cerebellum). Started out with severe vertigo, and progressed to loss of co-ordination in left leg and arm (with tremors in the arm). Also a cold feeling over one side of my face. That was back in October. I’m now completely recovered, and have had no further problems. Hopefully this will continue. I hadn’t seen that post from Barts before. Currently deciding on a DMD, so all info helps, scary or otherwise!


randymt
2 years ago

@stumbler That article was a very scary read… It describes my symptoms perfectly 🙁

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