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1116556 tn?1345115906

What is Considered "Normal" Lesion Growth?

It's been a while, I know.  Sorry.  Life get's so hectic in a tough economy.  I think the last time I posted was arounch March-ish?...

I had been on Copaxone 3 months, last flare up being heat around my abs and legs.  Anywho - no pain, no complain... and honestly, I just wanted to forget about my MiSerable companion for a while :)

After being laid off in April, I found employment in June.  Crazy stressful, insanely demanding, and I'm just trying to hide my condition as long as I can last.

So, yesterday I went for a 6 month follow-up brain and c-spine mri.  Doc said I had one new lesion in March and another yesterday... making for 2 new lesions in 6 months.

I say to him, "that's good.  The Copaxone must be working well, huh?"  He then tells me that 2 lesions in 6 months is not horrible, but not good either.  That this is progressing and he suggests switching to Rebif... as well as switching doctors due to him not solely focused on MS studies.

I was under the impression that I will always find new lesions.  That 1 or 4 in a year is not bad.  Am I wrong?  Does anyone have any knowledge from their Dr's opinions or readings to refer me to on what's considered "normal" rate of growth?

I'm confused and want to re-set my expectations.  I've experienced one new symptom in 6 months.  Burning on one side of my face and numbness on the other.  Lyrica helps but that crap knocks me out and makes me a doe-doe bird at work.  

Thanks for listening :)

Have a great evening.

**Mayperl
4 Responses
Avatar universal
Hi, I'm new to this forum...... glad I found it.  I've been on Copaxone for a little over 2 years.  I was on Betaseron and then Avonex but they really made me feel down and depressed.  The Copaxone is better in that regard.  After a year on Copaxone, I still had a new lesion.  

Unfortunately, my neurologist who I've been seeing for 14 years (he is the one who finally figured out what was wrong with me) is not a big believer in MRIs apparently because I've only had 3 or 4 MRIs in 14 years with MS.  So I really don't have a great record of lesion activity.

When I commented that having a new active lesion after being on Copaxone for a year was not good, my neurologist told me it was better than 10 .........  did I mention that he's not very sympathetic either???  It's probably good that he's not extremely sympathetic because it keeps me from complaining all the time ............  Of course I went years between the original MRI that was used to diagnose MS and the next MRI.  Then a year between the last 2 MRIs (April 2008 then February 2009).

I wouldn't be overly concerned about 2 new lesions especially since you've only been on Copaxone for a couple of months.  I prefer Copaxone to Betaseron and Avonex.......  I like small needles!!  If you've only had one new symptom then that's great news.  I've had a ton of new symptoms that wax and wane ....... keeps life interesting ........  never know what's coming next.  
572651 tn?1530999357
Hi Mayperl and welcome back.  It has been a while - I hope you don't stay away so long this next time.

Congrats on the new job - I hope you get into the swing of it soon and all goes well.

New lesions are never good and not normal.  We should hope that we have no new lesions.  Period.

That said, i have no idea how many new lesions you might expect and I don't think anyone else can answer that, either.  Each case is so individual and  there seems to be no pattern to this.


so you have been on copaxone about 8 months?  The new lesions might be a sign that you need to try a different DMD.  Good for this neuro to tell you that you could find a better doctor.  Seeing one who specializes in MS is essential before you start making major changes to your treatments.

come back soon, ok?
Lulu
Avatar universal
I was dx last summer. My MS specialist told me that in the beginning, it is not abnormal to get a few lesions in the first years. Then they start to slow down or wane. The symptoms are important to tell my Dr. They keep record of any new sx and how long they stay.

I just had my 6mo check up. The first thing he said was "Put your worries to rest, your MRI came out good". He started showing me the lesions. He wasn't overly concerned about the # as much as new symptoms. He said the Copaxone was working for me..?

Not sure if this helps but I wouldn't worry too much about the number..I have a friend that has over 20 lesions and you wouldn't even know she has MS. She is a kickboxer, runner, RN ER...She has been on Copaxone for 12 years.



Take Care!
Kristi
1116556 tn?1345115906
Interesting feedback, and thank you :)

Katie9639:  I was dx in Nov '09. Started Copaxone in December.  On it now for just over 8 months.  The Doc keeps asking me to continue IV solu-medrol infusions, which I don't want to do because I have done this already (twice) in 5-day increments to treat symptoms.

Since Nov '09 I've experienced many many new symptoms.  The 2 new lesions are from after monitoring within 6 months.  The doc says solu-medrol will help attack the MS to stop growth. ??? I think he's nuts.  If that were the case, we'd have a solution to this madness!  I dont want to start on regular infusions because the massive headaches, and time off work to get it done... not to mention the freakin weight gain!  Up 2 sizes since dec because of steroid infusions.

Switching Doctors is probably a good idea.  And I'll do it.

Lulu :) - thanks for replying, and thanks for your input.  This Doc told me that he has many MS patients that he helps "maintain their care" and that he thinks I need extra attention from someone that focuses solely on MS studies.            

He added, his patients see no new lesions.  I've had 3 MRIs in 10 months. The lumbar puncture, and evokes potential tests. I'm on monthly b-12 shots, and vitD 2000IU.... lyrica, gabapentin, and copaxone. Holy consumption!  Daily headaches for over a week now.        

I've read somewhere that headaches are a sign of a symptom on its way??  Dont know how much truth there is to that yet, but soon to find out, huh?  My eye pain (optic neur) is accompanied with those headaches, so who knows?

The current doc says the headaches are unrelated to the disease.  I wish I felt confident in the information these quacks are feeding me.  I'd like to know that I can have faith in the data and opinions!  Instead, I'm here trying to gain further knowledge in what others have learned and experienced.

Maybe I'm approaching this wrong?

oh well.  It's out of my control.  NOT gonna stress about this.  I keep telling myself, "Self!  Nothing is THAT important to be upset over.  If my family is well, all is right, and the world will continue to turn."  :)

starryeyes1:  Thank you for sharing.  I had set my expectations to be the same as you mention in your first paragraph.  Now, I'm just more confident that I need to get in with a specialist.  

Hoping all of you have a great weekend :)  I'll be mowing, weed wacking, poop scooping, trash bagging, cleaning house, laundry, dishes, and shopping. PHEW!  Dont know how much of it will actually get done, but I need to try.

Husband just left for oil spill duty in N. orleans.  First time we've been separated in 6 years!  I've always had him to help out, and he's been so understanding with my situation by turning into OUR situation :)  I hope you all have some great helpers, too.

**Mayperl



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