Problems Galore! NEED ADVICE!

[CHKREA2]

I was diagnosed with MS at 15, presenting with total numbness on my right side. I started with Copaxone, but I has terrible site reactions, and had several relapses while on it. Next, I tried Avonex, but I had the flu like symptoms really bad, and still continued to have relapses. Next I tried rebif, but as with the others, it did not work. I then tried Tysabri. I really liked this drug, and it worked really well to manage my symptoms, but I had been on it for 24 months and tested positive for the JC virus antibody, so we stopped the Tysabri. In March, 2011, I started Gillenya. I have done really well on this drug, and had no complaints (except maybe the cost), untill this summer. When i was 12 I was also diagnosed with Glaucoma. My pressure in my eye got really high in April, so i had to have a shunt put in to relieve the pressure. Two months after the procedure I got a really bad infection (perirectal abscess), and have had to have 3 surgeries so far to right this. I still have one, maybe 2 more to go. After the abscess, my eye started really bothering me, and I found out that the tube had become infected as well, so they had to remove the tube. My pressure is still really high, and just had a laser preocedure to lower it for now.

The doctors do not know what contributed to the infections. It could have been that the Gillenya so depleted my immune system that the foreign body in my eye triggered something, but I am not sure. Has anyone on Gillenya had any weird infections??? Right now I am off the Gillenya to boost my immune system because I have to have the tube put back in my eye. I am feeling really bad right now, being off my meds. I am soo soo tired, and I am having terrible headaches. I feel like I am a strange case, and no doctor can really figure out what to do with me. I love my doctors, and I trust them, but I am so tired of trying things that don't work. I NEED to find something to help me get better. I am only 25, and I feel like I can't live my life due to all my illnesses.

I know this is a long, and somewhat whiny post, but I just need to vent to people who somewhat know what I am going through. I am really happy in my life - just not my health. I am happily married to my highschool sweetheart, I work for my family's company, so when i am not feeling well they understand. I am very lucky in many many ways, but I am so tired of surgeries, and failed meds, and feeling bad- It is wearing me out.

Anyone still reading have any advice ro simular situations???

[Jules A]

No advice but I wanted to welcome you to our group!

[rickalex2]

You are not alone!

I feel for you! I haven't had quite the same problems you've had going on... but I sure do miss the days when I only had to worry about my MS and not all the other things that are going on with my body. i feel like my doctor thinks I'm just some crazy person, but I have all these symptoms that are not MS that they cannot pinpoint and it scares me. We KNOW our bodies and we know when things just are not right...sigh~ I'm taking Tysabri and awaiting this years results to my JCV virus test.

Last year it came out fine, but they retest each year to see if you've picked it up somewhere in between... so I'm hoping I'm still negative but still waiting to hear. Had the test done last week. If I would become positive, I just don't know what I'd do!! I've been on Avonex and hated the side effects of it. Gilenya is so new that its hard to say if thats whats causing your problems, but I would guess its fairly likely it is! I will say a prayer for you! Hang in there. I can feel brighter days ahead for you! You truly already are Blessed with your hubby and working for a family business that understands your health issues! Don't give up!