Same lesion just bigger

[Ant1981]

Just had latest MRI its enlarged a bit more. Same brain stem 1 lesion.
symtoms are similar but worse. On IV steroids for 5 days , this is no 4 . No change.
i was walking 4-5 days ago now not so much.
barely at all.
i was diagnosed with RRMS, but at 37 almost, could could it b Progressive ?
is there any good news ?

[KatieAgain]

I dont think it is PPMS. But brain stem lesions are bad...can cause some ugly symptoms. Hang in there....hope the Solumedrol works for you. 🌷🌷🌷

[Ant1981]

Will I get better?

I dont think it is PPMS. But brain stem lesions are bad...can cause some ugly symptoms. Hang in there....hope the Solumedrol works for you. 🌷🌷🌷

soledrol has no effect at all funny how first time brought me back but symtoms got stronger.


I'm laid out in hospital bed now, useless and scared will I ever recover! Im in hell

[rdmc]

soledrol has no effect at all funny how first time brought me back but symtoms got stronger.


I'm laid out in hospital bed now, useless and scared will I ever recover! Im in hell

Try not to worry about what symptoms will stay or not stay. MS is full of surprises, and sometimes
a symptom I figured would be around for a while, decides to calm down and vice versa, symptoms that have vanished quickly before hang on. Steroids take time to work sometimes, and even symptoms that stick around don't mean that will be your new normal...I'm not sure of the
time frame (I think it's 6 months, maybe a year) that neurologists say a symptom can hang on
before it's considered a permanent symptom.

I read a very wise blog post from someone recently and they also had a chronic illness. She
was speaking of the tendency we all have of "rehearsing tragedy." Our minds immediately go
to the worst case scenario, and since we're not really at that "scenario" yet, she says we're just
rehearsing for something that might never come to pass. I am more than guilty of that, and
now I try to recognize when I'm doing it and stop the mind frame (I don't just do that with MS, anything in life can cause this to happen.)

During the summer, a few weeks after I had had quite a nasty respiratory virus that caused hospitalization, I quite suddenly lost my ability to make coherent sentences (about 1 in 3 were coherent...the rest weren't gibberish, but they didn't communicate what I wanted to say. I also lost my typing ability. I could look at a word, and not be able to type it into the computer.) Since my job is 100% computer based, in my mind I had myself unable to ever work again, and unable to communicate with my family after having the symptoms for less than a day. My rehearsal was really ramped up that day. My neuro just thought it was a mondo attack because of the virus I had had...and he was right, the speech came back in a few days, the typing took a couple weeks to resolve, but my rehearsal had been useless...the "act" never played. I'm allergic to steroids, so they just came back on their own.

BTW, I have a rather large lesion in my brainstem, it's in my medulla ...it's been the main cause of most of my symptoms for over 20 years (my first symptoms were cranial nerve issues which didn't even register MS to any doctors at the time.) I have lots of other lesions that might not even be considered MS lesions were it not for the fact that I have the brainstem one and my clinical diagnosis bears out MS.

The Wheelchair Kamikaze blog (goes by that name as the address) has an interesting piece...there's a link in the lower left margin of his main page and was written many years ago, but is still pertinent It's call the Misdiagnosis of MS...he too has
the "uni-lesion" issue.

Hope you recover quickly.

[Ant1981]

I don't know what to do

Well it's been 6 weeks and my symptoms are still active,


what are i to do or think ? Been In hospital for a week on steroids with no effect.

will they get worse or improve?

[KatieAgain]

I had a flare that lasted several months and I could not walk. Scared the heck out of me. But I did get better...much better. I required some extensive rehab, but I walked out on my two feet.

Everyone is so different, but lets just keep thinking positive regarding your outcome. 🌷🌷🌷

[SNOOPY]

Hi Ant,

It's very possible and not uncommon for an exacerbation to last several weeks to several months and recovery can take longer. Steroids don't always help and sometimes an exacerbation needs to take it's own course.

It took 3 months for me to receive a diagnosis of MS. Before I saw Drs. and throughout my diagnostic process I was in the middle of a severe exacerbation. That exacerbation lasted approximately 6 or 7 more weeks even with steroids. This exacerbation affected my mobility to the point of barely being able to walk, along with many other symptoms.

My Neurologist told me the best thing I could do is walk, my expression , he told me he knew that I could hardly walk but walking would help. My walking consisted of taking multiple trips within my home, slowly, very slowly, I increased my walking. It took me a year to regain my mobility, at that point I had my second severe exacerbation and the process to regain my mobility began once again. It took another year to regain my mobility.

Recovery from exacerbations can be complete (no symptoms) or partial (residual symptoms) with partial being the most common. Living with MS usually means learning to live with symptoms.

[Ant1981]

Oh my

I can barely walk too and this is my first real flare up.

my right arm is so weak too plus balance issues and numbness, double vision, I can't write at all.

This awfully hard being a noob that's why i value your input.

I can only wait I guess but how long? Before I lose my mind lol

when can get a little relief?