Wish I weren't here.

[JBWInColorado]

But here I am.
I'm Jessy, live in Denver and am still trying to wrap my head around all this.
I suspect I've probably had MS for the past 5 years since in 2008 I started experiencing these brain shocks and soon after I was having excruciating, debilitating nerve pain in my left arm that no one could diagnose... but the stupid doctors at Denver Health never bothered with an MRI. They just kept feeding me neurontin & percocets and even told me I had PTSD!! I also at that time lost muscle control in my right hand - that never improved and I'm convinced it's permanent at this point. I'm not as sharp as I once was - my brain feels foggy and slow. And then the speech impediment/slurring in the past year or so. Thank god that arm pain finally went away.

Nystagmus sent me to the ER on August 30, 2013 and that was that. Fortunately the MRI showed none of the lesions were active... but one must have been since my eyes were shaking.

Haven't decided on a treatment yet but the MS specialist I saw has narrowed it down to 3 -- the infusion that might cause brain infection, the pills that may tear my stomach up or Copaxone (the only one who's name I can remember).

Helpful info on here so far.
Cheers,
Jessy

[Seasha]

Hi Jessy and welcome to our world! MSWorld.

Sorry to find you here though. It's tough having a diagnose. Even tougher having to wait so long. I had to wait 10 for a definite dx and I wondered if it was treated sooner, I wouldn't have had so much permanent damage today... Pure speculation at this point. Now, it is what it is and we carry on!!

Hope you find a treatment that works well for you. If one doesn't work or agree with you, you can always switch.

Take care

[22cyclist]

Hi Jessy: Sorry you have to be here too. However, I am glad you reached out to us!

The meds: The infusion med you talk about is Tysabri. The one that can give you stomach problems is Tecfidera. The third is Copaxone. There are pros and cons for each. I take Tysabri. You may not want to start out on that one, although it does have an 80% efficacy of decreasing your relapses and new lesions, plus decreasing activity of old lesions. If you are JCV- you are OK to start Ty. They have to monitor you closely. If you become positive at any point in your treatment, there is an index that you can use to weigh your risks. It is individual and is tested by a blood test. The longer you are on Ty the greater your risk for developing PML. That is why I might not pick this one first.

Tecfidera has a 50% efficacy for decreasing your relapses, new lesions, and activity of old lesions. You also have to take a JCV test for this drug. At this point there has been only one person that gotten PML from Tec (They think), and they had taken prior immunosuppresants. This is a pill and the stomach issues seem to go away after 2-3 months. People seem to like this pill.

Copaxone has a 30% efficacy for decreasing your relapses, new lesions, and activity of old lesions. No JCV test needed for this drug. It is a daily sub Q injection. It has very few side effects other that injection site reactions. I took this for a while and liked it quite a bit.

You can go to the National MS Society's website and look up drugs. They have a nice section about the different drugs available and their side effects. You can get a better idea of which drug you might want to start.

Good luck and let us know how it goes, OK?

Take care
Lisa
Moderation Team

[BillyL1677]

Hi Jessy

Hello fellow Coloradan. I live up the hill from Denver, bout 40 miles.

I know its hard to believe, especially at first. I was dx in august 2012 and have had symptoms for about 10 years prior. The best thing to do is surrender to the flow(love Phish btw).

I am currently seeing a dr at the University of Co hospital. Referred by my Neuro DR. Haug. It has been a long blurry year for me. That's the best way to describe it I think. I am not who I used to be, by a long shot.

My original DMD was Copaxone. I had anxiety pretty bad on it, or it was the MS not sure. So they switched me to Gileyna about a month ago. I still have anxiety and my brain still doesn't work like it used to.

Down side to Copaxone was the daily shot, but I think I should have stayed on it. The G is still up in the air. Only a month so far. Will see.

I wish you the best Jessy! The journey is just getting started. The more I worry the worse I get FYI. Stress for me is a no-no. Same with HEAT! GOOD LUCK MAN hope you find peace!

[JBWInColorado]

Hello phellow phan (my first show was in DC in 1994)
I hope you're not flooded out. (Isn't 40 miles to Denver a YMSB song?)

22cyclist: I am thinking the same thing about not starting with the infusions - I may save it for later... evidently my lesions weren't active on the MRI - no lighting up - and before this current flare up I felt just fine. No lesions on my cervical spine MRI. but yes - since this nystagmus started, it seems like I've been hit by a bus. The fatigue and fogginess just sucks. I can't even read an article on the news sites - it's like it's too much, and my brain shuts down immediately. I feel so stupid. Things I'm used to doing without a 2nd thought, I'm having a really hard time with. I went back to work today and I now wonder if I'm ready. I'm only working part-time but man -- stuff I used to do no problem is just too much now. Plus my eyes still aren't right. By the end of 4 hours I had a raging headache and like I said, felt like I'd been hit by a bus. I'm fortunate to have a job with such wonderful and supportive people though - they really care.

Thanks to all on this thread for the welcomes

Jessica

Hello fellow Coloradan. I live up the hill from Denver, bout 40 miles.

I know its hard to believe, especially at first. I was dx in august 2012 and have had symptoms for about 10 years prior. The best thing to do is surrender to the flow(love Phish btw).

I am currently seeing a dr at the University of Co hospital. Referred by my Neuro DR. Haug. It has been a long blurry year for me. That's the best way to describe it I think. I am not who I used to be, by a long shot.

My original DMD was Copaxone. I had anxiety pretty bad on it, or it was the MS not sure. So they switched me to Gileyna about a month ago. I still have anxiety and my brain still doesn't work like it used to.

Down side to Copaxone was the daily shot, but I think I should have stayed on it. The G is still up in the air. Only a month so far. Will see.

I wish you the best Jessy! The journey is just getting started. The more I worry the worse I get FYI. Stress for me is a no-no. Same with HEAT! GOOD LUCK MAN hope you find peace!