Tag Archives: Avonex

My story in a “nutty” shell

I have needed IV steroids 12 times since Jan 2010 for five bouts with optic neuritis and an unbelievable amount of multiple sclerosis relapses. Three of those twelve IV’s were 5 day infusions, while the rest were 3 day infusions. Still a lot of steroids to put my body through. I suffered through two solid years of very active lesions on my MRI and progression of MS symptoms and disability. The entire time I was on MS meds (except for the 3 months following my venoplasty treatment) those MS meds did nothing to help me and seemed to make me worse.

I did Copaxone first for 7 months and had 3 very bad relapses while on it, losing my vision and needing to use a walker for a few days. I did try LDN (low dose naltrexone) and felt better in reference to my fatigue but it did not stop or slow down the downward spiral I was in. Then was switched to Avonex for 8 months (which made me so sick for 24 hours after each shot) and after losing bilateral vision in my eyes and having two more relapses with MRIs showing even more activity, I had to stop the Avonex.

At this time I was noticing a lot of head aches and very cold feet and hands and ended up getting tested for vascular issues and was found to have a 90% blockage of my LIJ (left internal jugular) vein and a 60% blockage of the RIJ (right internal jugular) vein as well as a 50% narrowing and webbing of my azygous vein. I was a candidate for the venoplasties and had them performed and was amazed at how much better I was after – they surprisingly seemed to have a profound effect on some, but not all, of my MS symptoms. I had my balance back immediately and was able to function at work as a physical therapist and was able to start working out in a boot camp class once a week for 3 months…

Then unfortunately my symptoms gradually started to come back and my MRI was active again and I lost bilateral vision again… I was retested at a vascular followup and my veins had renarrowed – I had restenosed. I had the procedure done again but the only benefit I gained from the second procedure was warm hands and feet again. No return of balance or any other physical deficits and my eyesight continued to worsen. So, I will not say that the two incidences are related or not, whether one causes the other or vice versa, but it is interesting how my symptoms reacted to the initial procedure and then after my veins renarrowed. Makes you wonder…

Anyway, after relapsing again, I was convinced to go on Gilenya and while on it for 4 months had another 2 relapses, lost 25 pounds, started having heart trouble with tachycardia and irregular skipped beats, had a white blood cell count of 2.0 and was extremely ill. So, I stopped all MS meds officially on Feb. 19 and after the Gilenya got out of my system (which takes about 3 months) I started feeling human again. I have had no relapses, only mini- or pseudo-flares of old symptoms which don’t last long as long as I rest and pace myself. AND my MRI’s are better! I still show all my old lesions, but nothing is currently active!

It’s a bit ironic that I feel better off MS medication than I did when I was on it. The only medication that ever made me feel some what better were antibiotics, which brings me to the possibility of me having late-stage lyme disease and/or Cpn (Chlamydia pneumoniae) which possibly triggered my MS or are the reason for my neurologic deficits.

Ironically, I did have lyme disease from a tick bite when I was 20 and was treated with Doxycycline for it. So recently I have re-tested myself for possibly chronic lyme disease through Igenex and the results were inconclusive with one positive band and a second semi-positive band so I have yet to try more antibiotic treatment for possible chronic lyme. I am awaiting the stem cell infusion that I will be receiving in 6 days. And then once the study is over I may send my Igenex data to a Lyme Literate Doctor (LLD) to maybe get his opinion on this and possibly pursue this to rid my body of lyme and possibly Chlamydia pneumoniae.

For now, I really do have all my eggs in my “stem cell basket” as MS meds seem to not be the answer for me. I refuse to go on Tysabri for fear of PML (although I am JC negative) and the rebound effect of lesions that you may get if go off Tysabri scares me as well. I am hopeful for BG-12, but if I can be MS drug-free following my stem cell infusion and have no further progression, that that would be the most amazing and best thing in the world to me! Oh, and add to that repair of damage… heaven!

6 DAYS! Wow, in 6 days my life will hopefully be changed FOREVER!

MS rears it’s ugly head… Again!

Ay caramba!
Oi vey!
Good grief!
Jesus Maria!

I am so tired of feeling bad. I’m incredibly fatigued in general. My legs are heavy – it’s tough to move around as much as I would like to. I’m limping on the left if I move around a lot. My right eye is bothering me again. My left arm is dis-coordinated. I’m having a bit of trouble finding words. This is so incredibly frustrating!

Although today is better than yesterday and the day before and the day before, so it goes to show you how bad things have been since last Friday.

Please let Monday come soon, and pray that Gilenya works for me! I need some stability in my life and stability with this disease!

Don’t get sick and avoid stress!

Those are the two things my neurologist said I must do to try and stop this downward spiral that started in December 2009.

Kinda difficult when you work full-time as an inpatient physical therapist, around ill people most of the day, and you have two young children in 1st grade and daycare that bring home every bug known to man.

Right now I am sick. Like, I have a cold, sick. Feel like a truck ran over me, sick. This stresses me out because I always have an MS flair when I get sick. And there’s my one-two punch. Sickness, one; stress, two. Thus, it’s no wonder that it’s tough to type this post as my left arm isn’t playing nice and my right eye is blurring out my computer screen. I am also limping my way around my house trying to deny the fact that I should just sit my ass down. Just fabulous! *insert oozing sarcasm* One ironically good thing is that I’ve been off work since yesterday because it’s my 7 year wedding anniversary tomorrow. I was supposed to have these few days off to celebrate. Yay, happy anniversary to me… *again with the sarcasm* …my husband will be so thrilled when I give him his present of a hospital-grade cold. So anyway, I have until next Wednesday to feel better before I must return to work.

But more importantly, I am awaiting a couple of things, which is why it is imperative for me to get better and avoid going on steroids for an MS flair:
1. I have an MRI scheduled for Sept. 26th – won’t be able to have it if I have a flair and end up on steroids.
2. I am supposed to start the oral medication Gilenya on Oct. 3rd – won’t be able to do that either if I have to go on steroids.

So, this is where we hope and cross our fingers that I do NOT have an MS flair from being sick, so that everything can go as planned. I really need to start this medication – my optic neuritis (meaning the blurring in my eyes) and old symptoms flair up too often for me to not be on medications. I am still doing better than I was before my CCSVI procedure, but I need to do more as I believe this disease that I have is multifactorial in nature – partially vascular and partially immune system related.

I really need to de-stress. I really need to get well. I really need to get my life back.