I waited patiently for my neuro to call with the LP reults. I waited and waited. Finally, I called him, ten days later, asking to speak with him. The minute I answered to his return call, I knew he didn’t have good news. His comedy routine had faded. He was now somber and professional. I, at the edge of my rope, asked him in a matter of fact manner, “Did you get my results?” “Yes, but a few other test results are not back yet that could look exactly like MS..” And with my inquisitive way, I insisted, “were the results positive? they were, weren’t they?” He cleared his throat, and quietly answered, “Yes..but I still don’t have other test results back and I really don’t like to do these things over the telephone..” I felt confused, disappointed I didn’t write down the names of the other tests he was waiting on, yet still determined to save myself. I only responded with.. “Well, alright then..” He then asked me to hold for his secretary to make an appointment to come in and talk.
That week was my appointment, in a different location in Pittsburgh, a much more frightening office with CAN’T LIVE WITHOUT YOUR BRAIN written all over it to me. Bobby and I met with him privately. He seemed to be chipper again, plopped down in his chair with a stack of paperwork and folded his legs. “Okay, Donda, you have passed every physical test-so you are strong, and your MRI shows only 7 lesions that are inactive..but your LP shows some abnormalities. I suggest you try a med called copaxone. I only get a dinner for a kickback..chuckle..chuckle..we will have a nurse sent to your house and she will teach you how to self inject yourself daily with the prefilled syringes. This is the safest med. There are only four. One eats your brain, it’s killing many people, the other has a high rate of suicide due to the side effect of depression, and the other is of no help..So copaxone is the way you want to go..”
I took a deep breath, wondering what happened to the man who swore I didn’t even have this disease and looked over to see Bobby’s expression that the neuro was still wrong. So, I calmly responded..and my questions surprised him. “Dr. first, what is my diagnosis?” He stammered and seemed unsure, but answered..”RRMS..Relapsing Remitting MS..” I then said, “How can I be RRMS when I have not had two exacerbations?” (*you must have two attacks/exacerbations, as in optic neuritis, loss of vision, many extreme occurrences to entail an attack..*) He said, “Well, usually people are diagnosed with RRMS early on. I think you are a mild case, it’s very early. And, if nothing happens in the next five years, that means nothing will ever happen to you..” I then asked, “Do I have lesions on my spinal cord?” He fumbled through his papers, “um..uh..nope..” (*One has to have a MRI on their spine to know the answer to this, no one ever done a MRI on my spine…only my brain.*) Still in shock, I was somehow able to continue with my questions from my long hours of studying this disease.. “How can you suggest a med when there is no cure for MS?” He was getting bothered now. I have found in the last many years of dealing with doctors, they will either admire your knowledge and a person educating themselves, OR others will be offended, thinking: “Hey I went to Med school not you!” But this was my life, and nothing was going to stop me from getting answers. He said, “Well, the meds are not to cure you..they are to help you from delaying any future attacks..” I said, “I don’t recall the first attack?” He then told me, “I just had a patient leave from here..a PITT student, 19 years old, and her MRI had her entire brain lit up like a christmas tree, which means she is in big trouble. It’s not like that with you, Donda, you only have 7 and they are not active. That means the attack already happened. The fact that they are not active is a positive thing. And if nothing changes for the next five years, nothing will ever happen..Just stick the auto injector in you every night with the copaxone and don’t get stressed out. That’s dangerous.”
Oh..No stress. No problem, I thought. Boy, he really is meant to be a comedian.
I then only answered, in a very polite manner -of course- I wouldn’t do it any other way… “I don’t know how you could have held my MRI before and be sure I didn’t have this, but you get an abnormal tap and now are sure..when there is no such test that determines MS.. A spinal tap does not even answer that question. But, thank you for your time.”
He made a joke how I could take his job and handed me the copaxone prescription. Getting me on that med was what seemed important to him about that meeting.
All my reading told me to fear the meds. And, since the original med that scarred me, chantix, now states a side effect of the anti smoking med is Multiple Sclerosis! (exactly when my symptoms began, on Chantix..) I was not an advocate for meds, nor did I trust any Doctor. I thought of how the hospital continued to wheel my Dad down to radiation even though it was obvious he was going to die any second from Lung Cancer. I thought of how my Moms doctor told her “NO CANCER FOUND” but she was in the final stage of Uterine Cancer. I thought of how my Dr in 2000, told me I needed a bladder transplant-all to find I had a healthy bladder but a Fractured Pelvis from a car wreck?! From my personal experiences, I simply did not trust a doctor just because he was one. And it sure the hell didn’t help that most doctors get paid or receive some sort of kickback for pushing a med to their patients. Sure, of course there are some wonderful nurses out there. I’ve met them, I’m related to them. Yes, there are some amazing doctors who do exist. My family Doctor being one. Dr. Swank another. (who didn’t believe in the meds for MS.) But you would have to put yourself in my shoes to understand where my negative paranoia came from.
But..I wanted to help my family and myself in every way. At this point, in mid June 2010, I had been on the diet for six weeks at this point, new to all the many supplements I started-which take time to start helping, and we were moving into a new home Bobby and I finally found in PA.. and a move that could not had happened without the help of my dear loyal, cousin Scott & our best friends, Jacqueline & Chad. Drew knew what was happening at this point and knew we were trying to protect her so she was all for the new beginning in PA. Thank God.
The nurse came to our home to teach me how to shoot myself up every night. Right arm, right leg, left arm, left leg, left thigh, right thigh, stomach, all the points I had to take turns, every night to take my copaxone..and pray it helped me from having future attacks. Even though the percentage was small, I thought I should do all I can. Even though, once again-I did not realize I had a first attack?
The nurse and my reading informed me the pain of the shot..the med shooting through my system would be a very painful experience. And it could damage the skin if I weren’t careful.
I came to develop a system with warming my skin first..either in the shower or heating pad..every night I prepared the chosen spot for the night, and shot myself up. Yes..they were right, the pain was pretty awful. But I grew up on a farm and it felt like a hornet stinging me. That’s exactly what it reminded me of. I done it every night with ease. Clean, apply alcohol, warm it, shoot it, hornet sting that lasted ten minutes later, it was over.
The problem was the more time went on with taking this med, the more I developed symptoms I NEVER had! And at this point I knew I needed the support from people doing what I was, so I joined a support group: http://220.127.116.11/cgi-bin/yabb/YaBB.plWe call ourselves Swankers.
The ones who believed in the healings of Dr. Swanks findings..while leaning on each other with insight, humor, support and positivity. They became my lifeline. I found many Swankers did not believe in the meds, while the ones who had and done them, gave input on their experiences with the shots. (All MS meds are prefilled syringes.)
The more I read and the more I followed my intuition, the more the I knew – I was not supposed to take this medicine. I honestly can’t tell you why. I just had to find a different avenue. One that fit me. One that felt right.
As I grew to have more mysterious symptoms I never had before, I also grew more angry. Copaxone who wanted my insurance money assured me it was the disease. But I never felt angry till the med got in my system! One day as I seen my neighbor weedwacking down flowers behind our new townhouse, I had no control. I became far from the polite, kind, lady my Mom brainwashed me to behave. I stormed outside, “Did someone tell you to F****ing do that?!” I yelled. He looked surprised, he was elderly. I always was extremely kind to the elderly and children. What the? Who was I? How did that just happen? He turned it off, turned around, and started to explain. As I was shocked to what I just done. I profusely apologized and stopped taking the Copaxone for good, starting that day.
And it was the right thing to do. Not just for the elderly neighbor. But-after stopping the med, within four weeks the mysterious symptoms Copaxone gave me, STOPPED. And, I was now on the diet for twelve weeks at this point, and my burning arms and pins / needles had stopped completely.
I was taking a gamble to give up the one med that sounded the safest, but I still didn’t have answers. The neuros still weren’t answering questions. I was learning more and more the many diseases that mimics MS. I was discovering every day the long list of possibilities to brain lesions. It was time to go back to trusting myself. And, more importantly, stick to the diet since it was the one med that proved itself to me thus far.
I was about to embark on a new day to day life..in which I will soon explain. It was time for a new path to improving my health. First, I set up an agenda. I set up a new Dentist to remove all the mercury from my old amalgam fillings in my mouth, (yes, mercury poisoning can cause brain lesions..) I bought all the books I could find on lesions, and most importantly it was overdue to get to a second opinion, so I set up an appointment at the number one hospital in the country, Johns Hopkins…