1 year MRI not good

[Sazed]

Hello.
Had my 2nd MRI and LP in Oct '14 that bought me the MS Dx in March '15. Just had the 1 year follow up MRI and it was ugly.

On my 2014 MRI, I had 3 small lesions on the left that were causing some right-sided trigeminal neuralgia, but that was it. I started on Tec for ~5 months before becoming hypersensitive to it. I have been Plegridy nearly 4 months.

In that time frame, I have developed an onslaught of new symptomology. Worst of which is my left leg spasticity and some new left arm spasticity.

New MRI shows the left frontal lesion is grossly enlarged, I have a brand new right frontal lesion of remarkable size and bilateral parietal lesions, the more concerning of which is on the right. There are more new lesions identified, these are the significant ones.

My MS specialist would like to wait 6 months, remain on the same med, do a follow up MRI, see what happens.

My physiatrist wants me to get a 2nd opinion from a very well known, top-notch University Hospital due to the rapid symptom progression, MRI progression, and I guess my age and gender put me more at risk (38 and male).

[jreagan70]

Absolutely go get another opinion and change neuros ASAP. Rapid progression of symptoms and MRI activity is NOT an indication to continue business as usual.

Geez Louise, if you were bleeding profusely, would your neuro tell you to come back in a week to have it checked to see if you need a bandage? Would you agree to that? Same difference. Your MS specialist isn't an MS specialist if that's the management plan.

Aggressive progression calls for aggressive treatment. So please start working on that appointment with the university hospital neurologist TODAY.

[Boymom123]

Get a second opinion

Sazed, I am so sorry that the MRI didn't bring better results. I understand where your doctor is coming from, because sometimes the meds take time to work.

That being said, if it was me, I would be VERY unhappy and would definitely seek out a second opinion. There are other, stronger meds out there that might be be better for you and will stop this activity.

[ru4cats]

I'm with jreagan70 X 2!

[jumangi]

I'm also with jreagan70.

If it were me, when I made the appointment, I would tell them about rapid symptom and MRI progressions and that they need to move me to the front of the line.

[Sazed]

Thank you.

For some reason, it posted before I was done typing. Possibly user error. I agreed to take the 2nd opinion, but it may take weeks or months to get in.

I'm an RN and I've done so much research in the past year. I hadn't come across men in specific age groups being more at risk for progression. Any idea where to find more on this?

Thanks for telling me to do what I knew I should be doing.

[jreagan70]

I'm an RN and I've done so much research in the past year. I hadn't come across men in specific age groups being more at risk for progression. Any idea where to find more on this?

Keep googling. Go to MS authority sites and search there. And maybe you can use a doctor's or hospital's access to scientific journals and data bases.

Scientific data makes for a great foundation and academic knowledge about how MS works. But nothing surpasses your own individual case to know what's going on and what you need to do. For your aggressive case of MS, a quote comes to mind:

You don't need a weatherman to know which way the wind blows.

And for your neuro's brilliant plan to just monitor you for 6 more months, another saying comes to mind. Right after NOOOOOOO! it's:

Time is brain.

The clock is ticking.

[Waydwnsouth1]

I agree with all the other posters to get that 2nd opinion yesterday. Increased lesion load is an indication the DMD you are on is not working.

I did see you were seeking the 2nd opinion and could take several months. Perhaps you could have your PCP try to pull some strings for you to get you in sooner. Doctors have a way of doing that. Since you are a RN maybe you know a doctor at the hospital that may lend a helping hand never hurts to ask. Have them explain the situation making it sound sort of critical may help.

Just my two cents. Good luck to you and keep us posted.

[cjtmn]

Oh no!

I am so very sorry to read this! I truly hope your doc can pull some strings and get you seen sooner by a new MS neuro. Please keep us posted.

Cheryl

[Sazed]

Had 2nd opinion

I saw an amazing MS specialist at a top level hospital in the country and she is a professor at the University as well. She agrees to give the Plegridy a few more months before doing another MRI.

She is not convinced Plegridy is for me as my injection site reactions are so large and bad after four months on it. She does agree to give it more time though and try more PT / physiatry as I have been with the weak left side.

She states the worsening of lesion load / size could have been while I was between meds and I was only on Plegridy 2 months when this MRI was done.

So, hurry up and wait. Hope the physiatry can help my left sided weakness in the meantime.

Thank you all for your concern and I wanted to give an update.
Sazed

[cjtmn]

Thanks for the update

I have been wondering what you decided to do. I just started on Plegridy & have right side issues - your initial reports of tolerating the treatment well were so helpful to me. It's been 5 months since my flare, so I will be curious to see what the next round of MRIs show. Unless I relapse soon, my neuro won't take MRIs again until I've been on the drug for 6 months, so not until the summer.

Please continue to post how you are doing. Fingers & toes are crossed that your next round of MRIs show improvement.

Cheryl

[TinaP303]

"Hurry up & wait" - How we love to hate that phrase.
It's good that you've described the 2nd opinion as "an amazing MS specialist", feels like you trust her, that's good. Keep us posted on how it's going.

Sazed, nice name - Mistborn fan?

[Sazed]

Starting to react to Plegridy

Btw, yes - my name was stolen from Mistborn. Loved it. My injection site reactions continue to appear after 5-7 days and last 2-4 weeks. They are slightly raised, bright red, warm, tender, and range from 3"x3" to 6"x6" in a mostly circular pattern. I am a large man and my hand cannot even cover the larger ones. I was told these were expected and didn't worry about it. Guess they were supposed to decrease with time. I've had a lot on my mind and didn't do my homework haha. They may change meds again since my last injection put me down for several days. Did start pool PT in a "cool pool" which I think is low 80s and I seem to tolerate. Much more tolerable and seemingly effective than land PT. Bless you all,Sazed

[Sazed]

Update

Docs pulled me off Plegridy after last injection left large 6"x6" reddened area that ended up turning purple in the center the size of a golf ball. I was worried about necrosis; they ruled it a hematoma as it wasn't darkening up enough.

Started Gilenya this week. Fingers crossed. 3rd DMT in a year.

Just spent a few weeks off work due to exacerbations of left leg spasticity. I know it's a progressive disease dang it, but progress slower haha.

Figured I should update my own thread in case anyone had been following.
Best to you all,
Sazed

[TinaP303]

"Progress slower"
Good mantra for us all.
Best wishes for success with Gilenya.