Anyone else dealing with brain stem lesion?

[Ant1981]

I have been dealing with 1 aggressive lesion on my brainstem for almost 8 weeks now. I have multiple symptoms and no relief in sight. I am Walking slowly and recovery is quick after some steroids but after steroids the symptoms come back. This is relentless and I'm waiting for this lesion to calm down at somepoint soon.

will further relapses come in the same spot or elsewhere? Any one have brainstem lesions and would like share with me cause I'm kinda down right now.

is there any good news?

Thx

[pennstater]

Sorry, that I can't help. I just wanted to let you know that I understand why you would be feeling down. I do hope that things soon take a turn for the better. I know you could use some good news.

[rdmc]

I have a brainstem lesion (medulla is the exact place.)

I saw you asked in another thread if they were worse than other lesions. I'd
say they aren't worse, if they show up in autonomic dysfunction they may be a
little more tricky to ferret out what is/isn't being caused by that lesion.

As far as recovery, it's the same as other lesions, which means you have no control
or idea when a flare will end, and when the symptoms will subside. I've been
playing the "MS game" for about 20 years, and it continues to amaze me
all the coming and going of symptoms, and how long they'll last, what symptoms
will hang on and which will fade. (I'm allergic to steroids, so I never took IVSM with
my flares, so someone else may have to comment on the result of IVSM on a
brainstem lesion, but I'd be inclined to believe it's the same with regular lesions.

I suggest you read an MS study online, "More than Meets the Eye Multiple Sclerosis".
Just google those words and you'll come up with the article. It shows how our lesions
are in a constant state of flux, the MRIs are quite amazing because they've sequence
MRIs (I think 26) taken over the course of a year. So an MRI is a snapshot of that
day, that minute, in time.

There is less "real estate" in the brainstem, so sometimes a lesion can cause multiple
symptoms because an 8 or 9 mm, or 1 cm lesion takes up a lot of space in the brain stem.

The only other thing I've found from personal experience with my medulla lesions is
don't assume a problem is not MS because it doesn't seem like an MS symptom. My lesions
gives me fits with one sided cranial nerve issues (higher cranial nerves) so I've
had one sided tongue and facial issues from the beginning, it was my presenting
symptom, and it's still with me, but I take meds to keep it manageable. Other
health problems my GP and other specialists traced, all turned out to be caused by that pesky
lesions...BP, heart arrhythmia, and respiratory symptoms after running numerous
tests were determined to be the result of the lesion. All these are controlled
through meds, or in the case of respiratory issues, a bi-pap.

So there's all I know about brainstem lesions...hope it helps.

[Ant1981]

Severe symtoms won't give up

I been using steroids to keep my symptoms at bay. But evertime I tried tapering off I end up with worsening symptoms now my lesion is aggressive and it's been 2 months and I am entering another taper hoping that the s

[Ant1981]

Hoping

I been using steroids to keep my symptoms at bay. But evertime I tried tapering off I end up with worsening symptoms now my lesion is aggressive and it's been 2 months and I am entering another taper hoping that the s

that symptoms and lesion stabilize

[rdmc]

I don't know I've ever heard the term "aggressive lesion"...how are they measuring this? Is it growing rapidly, or is it something else they're seeing on the MRI?

[Ant1981]

Angry lesion

I don't know I've ever heard the term "aggressive lesion"...how are they
measuring this? Is it growing rapidly, or is it something else they're seeing on the MRI?

my neuro said it's an "angry" lesion and it had grown a little. I attributed the worsening of symptoms to it an ineffective steroid taper.

[pennstater]

my neuro said it's an "angry" lesion and it had grown a little. I attributed the worsening of symptoms to it an ineffective steroid taper.

My understanding is that the oral steroid taper after the IV steroids isn't really to help with symptoms, but to minimize steroid withdrawal on your body after the strong IV doses.

I discovered after my first relapse that I can't tolerate oral steroids, so after subsequent relapses and IVSM treatments, I no longer use the taper.

I think it's fair to ask your neuro what the purpose and hope is with the IVSM, as well as the oral taper.

[Ant1981]

Taper

My neuro doesn't understand why I do my solumedrol IV with oral taper after my symptoms come back stronger. I attribute it to smallincrease in lesion size and anxiety/stress cause I'm newly diagnosed. I can't function without steroids but wanna get off them. I'm down to 20 mg/day and hoping these symptoms stabilize so I can get off steroids and manage symptoms still.

its frustrating, any tips?

[pennstater]

My neuro doesn't understand why I do my solumedrol IV with oral taper after my symptoms come back stronger. I attribute it to smallincrease in lesion size and anxiety/stress cause I'm newly diagnosed. I can't function without steroids but wanna get off them. I'm down to 20 mg/day and hoping these symptoms stabilize so I can get off steroids and manage symptoms still.

its frustrating, any tips?

If your neuro doesn't understand, why would he prescribe it? Did I miss something?

The taper isn't going to help with MS symptoms, or do anything for lesion size. It is to minimize steroid withdrawal symptoms from the high dosage IV steroids.

The purpose of the IV is to reduce the inflammation, which in turn may help your symptoms subside sooner than if no steroids. Studies have shown that the IV steroids don't impact the course of your MS and are not going to impact the lesion size. You also have to be careful how often you do IV steroids and the days duration.

It is understandable how anxious you may be given the new diagnosis and really being blindsided by it. From a stress/anxiety standpoint, steroids always worsened my anxiousness. I would really look into ways to reduce this by medication, therapy, mindfulness/meditation, yoga, exercise, music, art, or whatever activities help you. If you can't do the activities you did before, explore new activities.

Learning techniques to help will serve you well in your journey with MS. I try to start my day journaling 3 gratitudes with my tea. If I feel anxiety creeping in, I start journalling my feelings and thought to see what's going on. Sometimes, just the act of getting it out makes it subside.

[Beach Betty]

Lesions and SPMS

I have 3 large brain lesions around the brain stem as seen on MRIs. Over the last 10 years, they have decreased in activity, not size. I am now secondary progressive MS. So fewer active inflammations but a whole lot more hardship in movement and coordination, some problem with occasional tongue, throat issues, and vision (optic neuritis). I did, on a neurologist's advice, do the steroid drip for optic neuritis, about 8 years ago. Got through 3 of 5 drips and ended up in the cardiac unit. I will never do steroids again! Steroids are very hard on your body, particularly the heart.
As others have said, you cannot predict when flare ups will occur and for how long. I just keep telling myself, deal with it! No use in getting down, doesn't help, just keep moving on (no matter how uncoordinated)!
Best wishes to you.

[timtam]

Good news

Hi Ant 1981,

My first relapse was caused by a large brain stem lesion. That was nearly 20 years ago. It was also my largest relapse and caused me the greatest amount of symptoms of any relapse. Lesions can occur anywhere in the brain or spinal cord and in my case I have never had another one in the brain stem so it is possible that you wont either. You have been unlucky this time.

Yes the steroids will help you recover more quickly but try to be patient as you wont be back to "normal" for some time. In my case it took 2 rounds of IV steroids and about 6 months til the lesion became dormant. It took a further 18 months and some rehab to get back to a point where I could fully function around the symptoms. I say function around the symptoms because some aspects never totally resolved but I have learnt ways to deal with them.

When I have an MRI now the brain stem lesion can no longer even be seen but it does still cause me issues with balance and spacial awareness so I still feel its effects. I have learnt not to turn my head too fast or to look down.

Try not to worry too much (I know this is easier said that done), just go with the flow. Rest lots, eat well and do what you can when you can. You will be OK.

[Ant1981]

Stable lesion

Hi Ant 1981,

My first relapse was caused by a large brain stem lesion. That was nearly 20 years ago. It was also my largest relapse and caused me the greatest amount of symptoms of any relapse. Lesions can occur anywhere in the brain or spinal cord and in my case I have never had another one in the brain stem so it is possible that you wont either. You have been unlucky this time.

Yes the steroids will help you recover more quickly but try to be patient as you wont be back to "normal" for some time. In my case it took 2 rounds of IV steroids and about 6 months til the lesion became dormant. It took a further 18 months and some rehab to get back to a point where I could fully function around the symptoms. I say function around the symptoms because some aspects never totally resolved but I have learnt ways to deal with them.

When I have an MRI now the brain stem lesion can no longer even be seen but it does still cause me issues with balance and spacial awareness so I still feel its effects. I have learnt not to turn my head too fast or to look down.

Try not to worry too much (I know this is easier said that done), just go with the flow. Rest lots, eat well and do what you can when you can. You will be OK.

After 9 weeks I tapered off steroids again but this time my symptoms are not getting worse so I'm led to believe the lesion and inflammation has ceased, but the symptoms are still there and some like walking are improving but others seem to take longer. Now I rest and wait for this lesion to shrink and heal and I have all winter or into spring. PT is got me operational and fatigue is no longer a major issue. It's nice to see improvements every morning when I wake us and hopeful that in 6 months I'll regain a lot of what is damaged.

[kellygrn]

Yes I have had a lesion on one side of brain stem for 50+ years.

I have been dealing with 1 aggressive lesion on my brainstem for almost 8 weeks now. I have multiple symptoms and no relief in sight.

will further relapses come in the same spot or elsewhere? Any one have brainstem lesions and would like share with me cause I'm kinda down right now.

is there any good news?

Thx

My suggestion would be to Google a brain and spine map. That will at least get you familiar with what controls the parts of your body. MS is a disease that seems to have a mind of its own. Comes and goes as it wishes. Are you on any MS drugs?

There are lots of very smart people here. Just keep asking questions. You will be supported here.

KK

[Ant1981]

Tecfidera

My suggestion would be to Google a brain and spine map. That will at least get you familiar with what controls the parts of your body. MS is a disease that seems to have a mind of its own. Comes and goes as it wishes. Are you on any MS drugs?

There are lots of very smart people here. Just keep asking questions. You will be supported here.

KK

im on tecfidera and remaining 1 lesion has plateaued it seems and see how my recovery goes.

all I can say id keep doing my PT but I'm so scared that I can't live even a close to normal life anymore. I used to be so active and I'm struggling right now but at least my walking is improving I'd like to drive and take yoga and regain some independence, I'm really sad.