Merc100
02-12-2005, 03:29 AM
I had 6 brain lesions back in October/ 04 and now my last MRI results from Jan /05 only 3 months later show 3 more totalling 9. This has me totally stressed out because I seem to have a MS Episode every 2 months of numbness, vertigo, speech problem, facial twitching etc. The doctor said it was VERY active and don't know why. She also said lesions mean nothing and not to worry about it. Still at the rate of 1 per month were does that leave me in 5 years?? I have a servere sinus infection for the last 6 months that can be the only thing I can think that is bothing my MS. I am just looking for anybodys thoughts or opinion. Its a little stressful.. Only 31 with 2 small kids and new to this whole MS thing.
Thank you
Merc.
Thank you
Merc.
Sponsor
gaulty
02-12-2005, 10:05 AM
at the start of my MS it was very active eyes ears arm leg fase chest lol i think thats it ,now im 2 years on and on interferon .....perfect well you wouldnt know i had ms i cycle about 100 mile a week and work on a building site full time also have a baby boy callum ,lol best med you can get ,so dont worry i find a lot of the time ms is a lot worse at the start,then dips away,its different for every 1 but you'll be fine
gaulty
02-12-2005, 10:06 AM
oh i had 7 lasions dont know how many know,after the 1st year
Jewel2
02-12-2005, 11:55 AM
Hi Merc,
That's the way my daughter's MS started - very aggressive lesion activity for the first two years, almost doubling in lesions each MRI (9-12 months apart). Though she continues to get new lesions, it has slowed down (she's in year 5 now).
I've heard of others who had it hit hard the first couple of years, but then it slowed down. Hopefully yours will do the same.
I'm not sure what your doc meant by saying that the lesions mean nothing. MS is all about the lesions. In fact, you can have new lesions, but no new symptoms - for a while, anyway, until they catch up to you. Are you on a CRAB or Tysabri? They will help slow the lesions down.
Best wishes,
Julie
That's the way my daughter's MS started - very aggressive lesion activity for the first two years, almost doubling in lesions each MRI (9-12 months apart). Though she continues to get new lesions, it has slowed down (she's in year 5 now).
I've heard of others who had it hit hard the first couple of years, but then it slowed down. Hopefully yours will do the same.
I'm not sure what your doc meant by saying that the lesions mean nothing. MS is all about the lesions. In fact, you can have new lesions, but no new symptoms - for a while, anyway, until they catch up to you. Are you on a CRAB or Tysabri? They will help slow the lesions down.
Best wishes,
Julie
Merc100
02-12-2005, 03:09 PM
First of all i would like to thank everyone that replyed.... i have not started any drugs yet.. I agreed to start the injections but my Doctor wants to to go to a meeting that discusses all the different types and then pick one. Tysabri is still about a year away from being precribed in Canada which is where i am. I will have to pick another... Was thinking of Rebif or Avonex.
What my doctor said about the lesions is that she have seen people with 1 lesion and are having alot of problems.. then she have seen people where the whole MRI is just 1 big lesion becuse they have so many and they are doing great. So she said not to worry. I hope she is right.
Do any of you know what can help heal lesions? I guess the question is once ou have them are they there for good? I would love to have another MRI and see 3-4 less one day I just don't know if thats possible.
Thanks again
What my doctor said about the lesions is that she have seen people with 1 lesion and are having alot of problems.. then she have seen people where the whole MRI is just 1 big lesion becuse they have so many and they are doing great. So she said not to worry. I hope she is right.
Do any of you know what can help heal lesions? I guess the question is once ou have them are they there for good? I would love to have another MRI and see 3-4 less one day I just don't know if thats possible.
Thanks again
thnkpos
02-12-2005, 04:20 PM
hi, my mri report says to many lesions to count, which in turn put me in a big state of o my gosh this isnt good... im like you i concentrate on the lesion load........ the dr told me u dont worry about how many u have u worry how they effect you thats where silent ms comes in, i went to see a neuro just to explain to me a couple of things,(to ease my mind) last week, before i see the ms specialist finally after waiting 2 1/2 months.......... he said my brain was compensating for the lesions.... making alternative routes...... and this i have read up on. i feel like i cant afford to get another lesion, cause theres no room for one........ i have 2 on my spine one enhanced...... which i now and for several months have the lhermittes sign.... other then that im sensory (knock on wood)
some dr's dont even do routine mri's they go by how the patient is feeling....... i have a hurt shoulder for the last 2 yrs, now i want to find out if its ms related or not last yr my nerve block came back neg. so i still have pain on certain movements, and im a nervous wreck, the neuro said he would recomend me on avonex cause he had experience with it...... and he said i could be silent ms, but since i did have very mild relapses, he would say i have RR. best of luck to you keep me posted on what med u decide on......
Jewel, what u'r saying is all my hundreds, (so it seems) will cetch up with me........wow thats not a good thought ...... :( i hope not...... :)
some dr's dont even do routine mri's they go by how the patient is feeling....... i have a hurt shoulder for the last 2 yrs, now i want to find out if its ms related or not last yr my nerve block came back neg. so i still have pain on certain movements, and im a nervous wreck, the neuro said he would recomend me on avonex cause he had experience with it...... and he said i could be silent ms, but since i did have very mild relapses, he would say i have RR. best of luck to you keep me posted on what med u decide on......
Jewel, what u'r saying is all my hundreds, (so it seems) will cetch up with me........wow thats not a good thought ...... :( i hope not...... :)
crystal22
02-12-2005, 06:46 PM
Merc100,
the way the lesions heal themselves depend on some cells in the brain called oligodendrocytes. they are basically helper cells for neurons and they feed the cells and restore the myelin sheath. Inflammation in the brain causes the myelin sheath to be destroyed, and also destroys some of the oligodendrocytes. once the inflammation goes away, if there are still enough oligodendrocytes left, they repair the myelin sheath and the lesion is healed. That's why symptoms of MS come and go. In the later stages of the disease, the neuron itself is damaged, which cant be repaired, so symptoms wont go away completely. It's true that you can have lesions in areas of the brain that don't cause symptoms, for example, I have 6-7 lesions in my brain and 3 in my spinal cord, but the one in my spinal cord is the only one I have any symptoms from. (numbness from the chest down). Hope I have been of some help, wish you well with whatever drug therapy you decide on. :)
the way the lesions heal themselves depend on some cells in the brain called oligodendrocytes. they are basically helper cells for neurons and they feed the cells and restore the myelin sheath. Inflammation in the brain causes the myelin sheath to be destroyed, and also destroys some of the oligodendrocytes. once the inflammation goes away, if there are still enough oligodendrocytes left, they repair the myelin sheath and the lesion is healed. That's why symptoms of MS come and go. In the later stages of the disease, the neuron itself is damaged, which cant be repaired, so symptoms wont go away completely. It's true that you can have lesions in areas of the brain that don't cause symptoms, for example, I have 6-7 lesions in my brain and 3 in my spinal cord, but the one in my spinal cord is the only one I have any symptoms from. (numbness from the chest down). Hope I have been of some help, wish you well with whatever drug therapy you decide on. :)
Merc100
02-12-2005, 09:31 PM
Thanks for the replies.. i have 9 lesions on my brain and only had one mri of my spine and at that time I had one small one... who knows I may have 3 now... But the number 1 symtom i have is numbness from the chest down exactly like you. I have had others but never really bothered me. I go numb from chest down every 2 months last about 4 weeks.
I had lhermittes sign last summer lasted about 3 months went away 95% for about a month now full fledged back again... kinda irritating at times.
Cheers,
Merc
I had lhermittes sign last summer lasted about 3 months went away 95% for about a month now full fledged back again... kinda irritating at times.
Cheers,
Merc
Heddi
02-15-2005, 06:32 PM
From what I have been told and read, the brain has the ability to repair itself but there may be some residual affects. I had an MRI in April and another in August and was told that my lesions were smaller. :)