If I had to name the most valuable things I have learned so far. They would be: Listen to what your body tells you. Your body will react to what your brain tells it. & Every single patient is not the same when it comes to the same diagnosis.
As I started my life in Pennsylvania again, the first time living in my home state – since I was 27 years old, I was lost in thought. A warrior wondering where to attack next. What next move I would make since I was faced with something that still had no answers..everything was up to me. I was fortunate enough to had found a home near my two closest friends..Jacqueline & Roxanne. To list what they each done for me is so paramount, my words would never do them justice. Jacqueline continued what she always had done; making me a part of her family. Including us in family events, holiday dinners, constant calls to check on me, driving me for fun nights out, and laying out all the foods this Swanker could only eat-every time I went to her house. Rox, checked on me every morning wanting to know how I was feeling. And, then encouraging me to join her local gym with her. Both made a world of positive change for me.
Some mornings I did not want to go and she never gave up on me. Many times I was too overly stressed to take a call from Jacqueline or to visit, and she never gave up on me.
If you have lost your parents-who you were close to all your life, your grandparents were also deceased, your husband worked away six months of the year, your only child was old enough and mature enough to handle herself, and you faced such a nightmare..your friends literally become your family.
I am truly not asking for pity or sadness for me. I don’t feel sad, so there is no reason for anyone else to give it. I have always been extremely independent and I know I am so fortunate to have Bobby and Drew who both love me with all their hearts, and show it every day. Plus I know how lucky I was to be raised and influenced by two of the most amazing, rare people you would have ever met-my parents. Lastly, the wise elderly will tell you if a person has 3 true, real, best friends that consider you family-in your adult years..then you are on the right path. And, I most certainly, have three strong, independent, loving, loyal, admirable best friends who I consider my sisters.
I appreciate my past-who was in it and all I have learned. I know I have a lived a long, full life..and I am young enough to experience much more.
I know I would have had more friends at my aide, had I reached out. (*again, being overly Howard Hughes private is a fault as much as pride, selfishness, etc.,*) So that is my fault. There are many other friends I sincerely care about. I just kept the battling tale to myself..and never reached out. It’s not their fault..and I have learned even more so with announcing this on Facebook, something I was too scared to do. But now proud for doing so..there are so many I care for on there. But the ones I tried to tell? And, were once who I thought-important? Showed me exactly what I had known deep down, all along.
And, that is great news. Who wants to waste time in this short life to who doesn’t deserve your time?
Another person we should all have, is a fellow Swanker named Kerry. She extended her olive branch to me on the Swank board..and I truly believe many of those swankers would be starving if it weren’t for this chef. She is one of the stars of the board. While working on her Swank/MS cookbook, she will post her recipies, all Swank friendly, and all delicious so we don’t feel as though we are missing out on eating – while never going over what the diet will allow. She has and to this day, treated me as an old friend from grade school, who worried about me endlessly, shared her life story with me, listened to me when needed, while always giving the best advice.
Dealing with this disease herself, she has been nothing but positive..teaching me I was ignorant to the facts of MS. Encouraging for a student just learning. Every swanker values her immensely.
In the meantime, I continued to set up my agenda, alternate between five books at a time on brain lesions, workout at the gym every weekday, take an assorted high dosages of supplements, actually go to bed and sleep eight hours-something that was very new for me, continued to practice yoga-something I had fallen in love with five years earlier-during the Chantix nightmare. I was enlightened and empowered every day.
First on the agenda, I went to my new family doctor, as she nonchalantly went through my filled out paperwork, she asked, “any surgeries?” “any meds?” so forth, I then told her what the neuro in Pittsburgh was telling me and what I had been dealing with. She was blown away. “WHAT?” as she looked me over up and down. “I don’t believe it. Based on what?” So, I told her about my head pain. She was adamant in telling me what I had already learned, migraine disorder causes brain lesions..and it’s hereditary. “Do you have family who has migraine disorder?” she asked. “Yes, I do.” I answered. “Well, I have lesions on MY brain from migraine disorder! Maybe you have the same!” the Doctor said. I just shrugged it off, while holding on to hope..she then asked, “Does anyone in your family have MS?” .. “No, not that I know of..” I answered. Then she asked if she could do some MS tests on me there in the office. Talk about a thorough physical, but this wonderful doctor cared enough to take her precious time and look for this in me, so naturally, I was grateful to adhere to the suggestion and get her opinion.
I could not believe it, this family physician, done FAR MORE testing on me, than any neurologist. Tests I had read about – that should had been done all along. Blew me away. An hour later, she looked me straight in the eyes and said, “Listen, you do not have MS. You were misdiagnosed. I know it. I see it happen all the time because the early symptoms of this disease are so vague. The spinal tap means nothing. I have lesions. You don’t have this..” I secretly thought..’oh my god..please oh my god..please..’ But the realist in me told me ‘what DO I have then? Just good health insurance?!’ .. I then said, “Well I have an appointment at Johns Hopkins set up for a second opinion..” and she replied-adamantly, “You are wasting your time to go. You don’t have MS..”
Then that same week, it was time for the eye appointment. I chose carefully. I knew optic neuritis was an early symptom for MS and she could look behind my eyes to verify any damage. Along with comparing it to my last prescription from only a year ago, to see how different my vision truly was.. I knew my eyes were always pretty bad and every one’s eyes gets worse with age, but one of my lifelong fears were at stake. Going blind. Thanks to now being a “Swanker” — I know now that MS can take away your vision in one eye or both eyes, for a month or two and then your eyesight can be miraculously restored, out of nowhere. I knew rounds of steroids could speed up the process of rectifying this horrible event..but I did not want it to happen at all. Plus steroid treatment stories on the support group always had a crappy ending with side effects. AND I was working diligently, to find out if I even had this disease! And what a cruel, heartless disease this could be.
Same as my doctor, the optometrist listened to my story, studied me..and the serious russian accent reassured me it was a very common misdiagnosis, as she picked up her shiny tool to ‘read behind my eyes’ .. she put it down, and said, “Just as I thought..” — I was a cat in a corner with my back arched…oh god..oh god.. “it is completely pink behind your eyes, there is absolutely no sign of optic neuritis..& for you to be diagnosed with such a serious disease, there would have to be the smallest sign of that somewhere..” she said.
Whew. Even if they both are wrong. Sure is wonderful to hear it.
Next on the list, the dentist. My research told me many things could cause brain lesions that would mimic MS. Lymes Disease..*hmm..I lived at a wood line in WV for years & a test for Lyme’s commonly comes up negative when it’s really positive, not enough B12 in a body–*I began B12 shots, mercury from those old silver fillings from your dentist-*I had a bunch of those, & migraines. Lord knows I lived with those for years. The list went on and on..
So, as I lie in the chair waiting for my dental cleaning to end and the rich, Pittsburgh dentist to come in, I was actually excited to begin the three days of dental work to remove this mercury. Of course, I prayed the mercury was the culprit to the lesions (lesions cause all the sensory symptoms I had before the diet..) but I told myself even if it was NOT the mercury, any thing poisoning my body should be removed so I could continue my quest to a new life of health. Without health, what’d ya got?
& No, insurance wouldn’t cover doing this because I didn’t like the silver mercury in my mouth. What insurance company would? But it was worth a shot..therefore, worth the money.
When he came in the room, I knew immediately this was my guy. I craved for seasoned physicians, dentists, optometrists. I dealt with students for too long living in a college town for so long.
Like a broken record while longing for what I wanted to hear, I told the dentist what the neuro suspected. Just as my new family and eye Dr. both said, The dentist was shocked. “Really? you look beautiful! Well, this will tell you a lot if it helps?” he said.
Oddly enough-with the emotional distress, I am always an ideal patient. I let them do their job. I don’t flinch. I don’t move. Although, during the procedure, I was one of those irritating women who looked at the assistant to ask, “you are suctioning the particles flying out quickly, right? I don’t want to swallow any of the debris..” Luckily, I got to know her and she seemed to like me..so she respected my wishes and stayed on top of it. Three days later, all of the mercury was gone from my mouth.
AND IT WAS ONE OF THE BEST DAYS OF MY LIFE — IN THREE YEARS — MY CONSTANT HEAD PAIN DISAPPEARED!! Absolutely bullet free. I could once again experience what often wished I could. What it felt like to not have head pain. To eat, sleep, laugh, talk, kiss, walk, shop, clean, write, drive, read WITHOUT that dreadful right sided head pain that they once thought was brain cancer! I just could not believe it. I thought it was a cruel trick and I would wake up in the morning with that dull, yet sharp, consistent head pain..but I didn’t -and knock on wood- I still haven’t.
And, I assure you, I’m not one of those people who can ‘will themselves into believing something’ .. I have NO CLUE how to go into denial, how to lie to myself, or live the story book motto..’I think I can, I think I can.’ I do or I don’t. It’s either all or nothing with me. No middle ground. Just who I am. If I don’t sleep well or I have drank too much wine? Yeah..I will feel a little soreness in my head, but who doesn’t?
Now it was time for what I was waiting for. Johns Hopkins.
This was like getting to the Wizard of Oz for me. The almighty answer. The Elvis of hospitals.
Bobby didn’t want me to endure any more fear and he thought this was the best he had ever seen me, when others would run into me they would always mention how youthful and healthy I looked, and I did feel great with the diet, supplements, sleep, and knowledge. But this was the finale..and for me, it had to happen. I read up on the ratings of Johns Hopkins, how respected the MS department was, and I was told I would be put through many tests. I was ready.
It was a beautiful, autumn day. My favorite season. I was in a good mood. Until we hit Baltimore, then the nerves hit. But I walked in there determined and confident, someone was going to answer me. I was not going to leave in limbo. This was it.
There was no wait. They were the kingpin of professionalism. I checked in and had a consultation with three of the most intimidating doctors you can imagine. I told them how the sensory symptoms started with taking Chantix, how the diet stopped symptoms, how Copaxone gave me symptoms I never experienced, how the mercury removal stopped a grueling three year old head affliction. Handed over my MRI and spinal tap results..then the lengthy tests begun. A doctor said I will say four words to you and you are to tell me what I said much later. She then informed me of my ‘list’.. “computers, glasses, apples, sunshine.” I nodded.
Then, the next..One strength test of many I was to push a doctor as hard as I could. I questioned this, “Really? I should push her as hard as I can?” All three doctors nodded, “yes, she will be fine.” So..I wanted to show them I was not sick, so I done just that and she looked like a ragdoll as she tossled back. Two doctors pressed down on my arms as I was to use all my force to raise my arms-I did. Same with my legs. They done eye tests-with machines I never seen before, put me on a treadmill and timed me, I had to punch my way through a box, ran pencils up my feet to see which way my toes went..Hours later, one of the doctors walked up to me–“what did I ask you to remember?” she asked. “Computers, glasses, apples, sunshine.” I said.
They had done every strength, sensory, memory, and eye test you can envision. I passed. While Bobby watched proudly, looking at the doctors reaction as though he was thinking, “Told you so..”
Afterwards..I assumed they would do their own MRI and spinal tap, and I would have gone through them again, but they only had another detailed conversation with me about my migraines / head pain for so long. They then left the room to get the head of the MS department. Bobby and I were left alone and he looked at me to say, “you showed them..you are fine..you’ll see Dondalin..”
I was then taken to an office with a ten foot tall man who everyone obviously feared as they shuffled around him to prepare his coffee and paperwork. He sat us down…and said, “Yes..Mrs. Danforth, first of all, you are not RRMS. That is wrong..” — I was lost in thought, Oh my god..I’m finally going to learn the truth! Finally someone who knows what they are doing! He’s no drug pusher! He won’t discourage the power of what we eat and put in our body! “But let me show you your MRI. You do have seven lesions. And do you see these two lesions? how they are shaped and what they look like as in color? these are called black holes. That means your cells and nerves died in these two. You have what we call Radiological Isolated Syndrome, meaning we don’t know how this happened to you. I am surprised you are doing this well!” — “Um..I follow the swank diet, workout, sleep, meditate, do yoga, and take supplements..” I said. “Oh? Tell me about it. What is the Swank diet?” he asked. I went into detail who Dr. Roy Swank was and all he accomplished with actual patients and how he got MS patients out of wheelchairs. He listened but was not interested. Plus, I knew deep down he knew who Swank was. For godssakes, he worked in medicine. There we were again, my biggest insult, to treat me like a moron.
“Well, I don’t think that will help you..I think you will run into trouble..I suggest you begin Avonex shots..you can take your time to think about it. Call when you are ready to begin. We will arrange to send a nurse to your home.” I nodded.. “I know. Thank you, sir.”
Bobby and I left speechless. We stopped at a quiet, restaurant nestled in the back of town, we sat down to eat.. we both looked at each other and both of our eyes welled up with tears, while holding hands.