many of you know I got kicked off Betaseron because my liver went wild! My enzymes were so high I got a call from the transplant co ordinator that she got notified. thats high! so, I did a wash out and over to copaxone I went.

now, to be fair, before B and C I was doing ok. I had my issues, I surely did, and I think anxiety contributed alot to it. I worried about every bump, bruise, tingle or squeeze. I think not having an answer as to what was wrong with me contributed greatly to my mental distress. I got tons of bad guesses, and wrong answers and you just know when something doesnt fit. Someone would say "clean up your diet. cut out sugar and soda." well, I dont drink soda and my diet is about as clean as you can get. I was even gluten free for a long time. or "its a migraine syndrome" that was my fav! it was slanted as if to say i was whining. Well, you betcha I was whining! I didnt feel good! I was scared and no one could tell me what was wrong with me. MS came along and so did the DMDs.

Went on Copaxone in March of 07. it seemed forever that it wasnt working. everyone kept saying hang in there, or it can take six months to one year to start working. I took the FULL year! it was a year of stinging shots, very few side effects, and those were easily controlled. Long about the 2nd year I was dizzy, woozy, headaches were out of control, I felt like with each day a bit more of my life slipped out of my hands and into the hands of copaxone. I have massive dents on my thighs, and bum, and belly. I have small dents on my arms from where the stuff ate the fat right off the muscle. I saw the MD once a month, and everyone was at a loss as to why I was chugging downhill so fast. My Optic nerve just went crazy! My stomach completely stopped working, and finally liver issues and pancreatitis set in. The medical professionals said "nah! CANT be C. it just CANT BE. there is medical lit that says it can happen, but its so rare, so bizarre, and so far out, that it just cant happen." Test after test and then finally a months stay in the hosptial in April of 2010.

Finally got a decent Gastro MD who figured out that not only was Copaxone causing so many liver/pancrease and intestine things to flare up, but the MS itself was attacking my gut. The lining of the intesting is made of almost the exact fat that mylin is made of, so MS sees that as Yummy! and doesnt care which side of the Blood brain barrier it lays on. MRI scan showed lesions on the outter lining of my intestine right over where the vagus nerve lies and where the phrenic nerve connects. Even in the face of all of that evidence the MS team said "keep shooting!" they agrued that the next attack could be the one that gets me premenant blindness, or puts me in a wheel chair. I argued that this stuff has a 30% chance of preventing the next relapse but a 100% chance of making me miserable!

I had stopped driving, stopped shopping for myself. stop my own housekeeping, stopped doing much except lay in bed and whine about how horrible I felt. I couldnt think, my words didnt match my thoughts, and they scared my husband into thinking that if I stopped taking copaxone, within six months I would be in a Wheel Chair! Poor man had vision of having to wipe me in his head. We screwed up our courage, armed with TONS of research we approached the MD just before my 48th b/d and said ENOUGH! we appreciate your opinion, and we are happy that you have tried to help us, but "we are done" we wont be taking this anymore, no matter what your arguement is. please stop. They were clearly upset and wanted to switch my to Ty or the new pill or plasma treatments or all sorts of other stuff, but we said NO! please treat my sx, but lets stop trying to treat my disease. I told them I would rather be in that Wheel chair and have my head about me than to be up and walking and not be able to participate in my own life. it was passing me by.

Fast forward one year later. With each passing day I felt like I got just the tiniest peice of my life back. I could think again! I could string together a sentence. My stomach stopped hurting and I could stop taking the dilauded which clouded my mind more than I can tell you. I was weak from all I had been thru, but with each passing day it got better and better. The GI guy started to treat my broken gut. The MS folks gave me whatever aids I needed to get thru muscle spasms or nerve issues. I started to eat again. I was evaluated by a nutritionist who said I was malnourished. my gut was not absorbing the nutrients from my food. As my gut healed so did I. The first six months dragged by, but with each passing month I started to do more, not just do more, but WANTED to do more and that was huge! I missed the girl I used to be. I used to be busy, fun, engaged, and turned on.

This past June 25th was my one year mark. I am walking at least 3 to 5 miles per day and have started to add hills to my morning. I am up at six and down at 8. I wash my own dishes. While I do pay girls still to clean my house I am participating more and more. I started cooking again. I was able to be in a conversation and come out the other side mentally intact. I personally feel that Copaxone is an amazing drug for those that can take it. it has shown great promise and proven itself to be very valueable as a tool in the fight of MS, but there are some of us that simply cant and shouldnt be on this med.

Am I cured? well...no! I still have MS. I still have many sx of MS and I still will have MS for the rest of my life, unless they cure this silly disease, but at least I am able to stand up and fight again. I still have spastic issues, and unless I take my tummy meds it will go nuts too. I still have very bad optic nerves and go blind when I go on those AM walks, but im going, blind or not. I have lesions on BOTH my optic nerves. I cant really watch TV comfortably, and I use DRagon Naturally Speaking for many internet activities so I dont have to stare at the screen while I type. I listen to books on tape instead of reading the printed page, but I have adjusted each and every time this disease has thrown stuff at me.

So, one year later, and I can say for sure that FOR ME this was one of the best decisions I ever made was to tell them NO on taking that medicine. I wouldnt go back to that dark corner for all the tea in china. Thanks for hanging in there with me when I was so sick, so lost and so confused with it all. When MDs tell you "take this" you are supposed to trust them, no?

now I am off to shower and wash the morning road off of me.

The miles you're walking will do what almost no med can. That's awesome Dej. I pushed my chair 1.2 miles then swam 20 laps today..after driving 2hrs round trip to neuro.
I barely made it up/down my driveway a few yrs ago. 140 miles & 750 laps so far 2011.

uplifting post from you, loved it.

Had my 6 month check up a couple of days ago. They are upset that I refuse ALL dmds now. I got the lecture on how much danger I am putting myself in ...I said "look, I eat clean, I exercise, I dont smoke, dont drink, and I am in great mental health shape, so why would you want to set me back?" Then they started on the MRI scanner. I said NO! I dont need one every six months, I just dont. I said every two years. They said every six months. We settled on once a year. I got half what I wanted, but they got half as well. Now when they try to schedule it, I will push it out as far as I can. HA!

I walked the dread Rabbit Hollow road today. its STRAIGHT UP! 45 degree angle. I made about 1/3 of the mile, and had to stop. dripping with sweat, covered in bugs and blind as a bat while i huffed and puffed for air to get into my burning lungs. Whooo! what a ride.

My BP has gone from 136/90 to 102/68 and my resting pulse has gone from 88 to 64 so my body is starting to show some recovery from the 3 or 4 years of sitting in a chair not feeling good, and whining about not being able to do anything. Oh boy are there days that I DONT want to go, but I go. Some days draggign a leg, blind and whiney, but I go. I cant believe the increase in my own energy level. My skin looks so much better. On C it was ruddy, and psoraisis pocked. now its back to smooth and clear.

I swear, I would not have made it without all of you. I literally thought I would lose my mind that last year I was on C. it was stealing my life force from under me. I felt awful, I looked awful. I was winded going from the bed to the toilet, and God forbid I needed to walk more than 50 steps. I would sit in the middle of target ON the floor and wait for the energy to get to the electronics isle. Never went to any store without a buggy to lean on. many days took the ride on buggy. step by step, inch by inch I am peeling off the layers. I refuse to turn 50 next June and be in the same shape I was in at 48. I just refuse! So, thank you to all of you for listening to me, and putting up with me.

Dejibo,

You are pure inspiration. After reading your post, I am inspired to exercise again and just do more. I am inspired by your post to do more and not give excuses. I have to take my life back and make adjustments so I can live my life for me not MS. Thank you for sharing your experiences. It is nice to know that someone else has some understanding of the issues associated with being a MSer.

You have made me realize that i need to reconsider my meds too.. I am tired of feeling "foggy" and like my thoughts really dont connect. I was "fine" before meds, ad now that i have been on them for a while, i think it may be the meds that are making me feel like this. DX 1988.... no meds til 2011 when i had optic neuritis, and since then i want to sleep all the time, my brain is foggy, i have very little stamina, and find my self thinking about disability. Hired someone to do house work, hate to go anywhere, and am just happy to sit on my butt. Have no interest in anything. THIS IS NOT ME!!! You have made me realize that maybe it IS the meds and maybe i should consider stopping them too!! Thanks,

Welcome Katmandu, nice to meet you. I beat you, I was DX in 1975.
This is an old thread to which you replied, but so glad you found us.
I hope you decide to stay and join us.

I thought this was a new thread because I lost track of Dej a while back when I was not reading here a lot. I thought she was checking in. Anyone know how she's doing?

The bottom line with her story is that if meds take away almost all cognitive ability they are hardly worth taking, if they are to be taken indefinitely, i.e., all of one's life. Today my cognition is bad and depression high because I'm on Augmentin too long with that tooth problem I described (the failed implant which I described on the Stumble Inn). I will go off it now because I know I can usually recover from such procedures without precautionary Augmentin. Another case where a drug is overused or wrongly used and makes the mind a murky pool full of competing dragons.

I hope Degibo is OK.

i thought this was a current post also.
i hope dej is doing ok.
her post is still a good message and bless her courage for changing her path.

No one here is putting up with you, we're supporting you! Good luck on your path.