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A MyMSTeam Member asked a question 💭
Huntington, NY

Hello, i have lesions on brain and spine
my neruo told me that in my last mri results two days ago, the lesions on left side of brain grew bigger. He said that they could possibly grow to black holes dead spots... can anyone explain this further? Which is the reason he wants me to change my medicine, i was on tecfidera, copaxone, Gilenya.. all have not worked therefor i have to change my medicine- scared to try another one due to side effects and how long they have been “fda” approved etc … read more

December 8, 2018
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A MyMSTeam Member

Your neuro has not done you any favors at this time! Not all MS lesions are permanent, even if they appear as black holes during 1 MRI (or more).

"A T1-weighted magnetic resonance imaging (MRI) scan shows hypointense lesions, also referred to as “black holes,” because they appear dark on the images. These "black holes" may represent areas of permanent myelin and axonal damage or loss, especially if they are very dark. In other words, the darker the spot, the more damage has been done.

When myelin and axons are damaged or destroyed, nerve cells cannot communicate to each other efficiently or at all—this is what causes a person's unique MS symptoms.

It's important to note that in addition to permanent axonal loss, a "black hole" or T1-weighted lesion may represent areas of edema, or swelling, which are temporary and disappear on subsequent scans. This is why a neurologist will often compare your current MRI with old MRIs—to see if lesions have resolved.

T2-Weighted MRI
The T2-weighted magnetic resonance imaging (MRI) scan shows the total number of MS lesions. This a good indication of a person's MS disease burden over the prior year. The MS lesions on a T2-weight MRI show up as hyperintense lesions, or "bright spots" and are often referred to as plaques. If plaques continue to become re-inflamed, they may eventually turn into "black holes." That being said, sometimes plaques can heal, repair themselves, and disappear."
https://www.verywellhealth.com/t2-weighted-lesi...(Phone number can only be seen by the question and answer creators)

The brain has "neuroplasticity", meaning it is able to find new nerve pathways to make up for losses in other areas sometimes. That is how some people (like me!) are able to see after having O.N. with full blindness.

Please keep a positive mindset. I fully believe that our attitudes affect our outcomes at times.

Try not to be afraid of other DMD's. You seem to need to again try something new to keep lesions at bay. DO speak to your neuro for clarification on "black holes" and what DMD suggested to try next. If you aren't comfortable with your current neuro, look for a new one.

December 8, 2018
A MyMSTeam Member

You may need new meds because you are having progression. Im not sure what black holes means..I guess deterioration? You should call them for clarification. Thats their job.

December 8, 2018
A MyMSTeam Member

I hope this helps.
Published on Apr 23, 2018
Disease modifying therapies (DMTs) – the front line in our fight against MS. Some data presented👇 by percentage:
@ Avonex decreases relapses by 30% and has no effect on brain atrophy.
@ Copaxone
Decreases relapse rates by 30%
Decreases brain atrophy by 20%
@ Aubagio Tablet
Decreases relapse rates by 30%
Decreases brain atrophy by 20%
@Gelenya
Decreases relapse rates by 60%
Decreases MRI activity by 60 to 70%
Decreases brain atrophy by 34%
Chance to improve symptoms is moderately high.
@ Tysabri:
Decreases relapse rates by 67%
Decreases MRI activity by 80%
Decreases brain atrophy by 45%
do not use this medication if you are JCV positive.
@ Tecfidera. Tablets
Decreases relapse rates by 50%
Decreases MRI activity by 50%
Decreases brain atrophy by 30% @ Rebif is Interferon beta 1a, which is also sold under the brand name of Avonex. Avonex is a slightly different formulation.
@ Ocrevus
decreases relapse rates by 80%
decreases MRI activity by 95%
decreases brain atrophy by 45%
Chance of improving symptoms is very high in RRMS.
Decreasing relapse rates should be a must when fighting MS because a relapse can be unexpectedly horrific.

December 8, 2018
A MyMSTeam Member

Hi ask your doc about lemtrada, I have done 2 rounds of the treatment and I have not felt this good since I got diagnosed its been about a year since I had my second round!

December 18, 2018
A MyMSTeam Member

I have been on Tysabri for 17 years and aside from fatigue and expected aches & pains, I am still mobile and able to work part time. I have lesions in my brain, but mine are primarily throughout my c-spine. I hate this stupid disease!!!! Don’t be afraid of Tysabri, it’s been great for me and several of my friends (as long as you are JC negative.) Best wishes to you..

December 11, 2018

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