I am finally ready to talk. I have been living in fear for almost 6 weeks. I was afraid to talk for fear it would influence my outcome. I had been put into victim mode and was burying it deep inside because I had to keep doing what I do until it was time for me to stand up for myself Wednesday was that time.
I had been being screened to enter into a clinical trial when I had a disaster of an MRI. I have had 12 MRIs since I began this journey in early 2008. I don't know why this tech had such a hard time that day, but she did. I was pulled out 4 times to reposition my head. I had taken Valium & came after my newspaper route so that I could sleep thru my claustrophobia. I did this every time, I actually took less this time hoping to see if my fear would be less since this was becoming more normal to me. As normal as being shoved into a tube can get. Well this time the tech was upset that I would drift off. She told me I had to stay awake. I told her that no one disclosed that to me and had I known, I would have prepared to give that a try. I was in this tube for 2 hrs with nothing to look at but the washcloth. Even if I wasn't claustrophobic, I don't know that I could stay awake without suffering from boredom.
Needless to say, she was very frustrated with me and let me know. Often. She said I was jerking and it was messing up her images. I have MS, Lady. Tremors, leg jerks, fatigue...um, kinda part of the program, ya know? I had to have some with and without contrast. I've had the dye injected into my veins before, but this time was different. I had an almost immediate reaction. My mouth and ears felt kind of itchy. My breath felt a little strained. I thought, "Am I having and allergic reaction to the dye?" This was the last part of the MRI and she had said it would only take 4 mins. I thought I would just wait to see if I could make it through the 4 mins before I would mention the weird reaction. I am holding onto this a kind of alert system that lets her know if I need to be taken out. He reminds me of the pump they squeeze on a blood pressure cuff. At this point the itching and the breathing haven't gotten any worse, so I wait. It starts to go away and then she tells me we are done.
When she pulls me out, I tell her about the reaction and tell her why I didn't say anything. She asks if I still feel that way, and I tell her I don't. She helps me off of the table and once I put back on my bra and jewelry, she walks me out. I call the research assistant the next morning and tell her the MRI was a disaster and we may have to repeat it. She explains it may not be necessary as having a certain amount of lesions isn't a big factor. It's more of a baseline. She wants to wait and see if they question it before we repeat it. She calls me a while later and tells me the tech said I never said anything about a reaction. "I most certainly did! I do not mess around with my health and I told her in case something else happened." Maybe that tech doesn't like me?
The research assistant calls me after this and says I have to repeat the ultrasound of my pancreas because there were shadows from the first test. Now I'm not one to freak out, but this girls "poker" voice needs work. She is tell me it's probably nothing, or even "gas", but that they need to make sure. The whole time that she is telling me the standard response the tone of her voice is not calm or reassuring. It is completely ominous and foreboding. When I got off the phone my husband asked if I was ok & I had to say I don't know. I told him what she said & he asked if I was worried. I told him I wasn't gonna dwell on it until I could go back because until I have a real answer there is nothing to do. In the back of my mind I was a little concerned. Turns out I was right on as far as her tone of voice. I'm fine by the way. The shadows were nothing. I was told that research was ready to send me for a CT Scan & ultrasound suggested we first repeat the ultrasound before we overreact. See? Not in my head. Should have been my first clue to go running.
Research calls me a few days later and says ultrasound is fine, but MRI wasn't. She says MRI shows no lesions. (Let me repeat that. "The MRI shows NO lesions".) I say, "I told you it was messed up. So are we gonna repeat it?" She says, "No. There are no lesions, so you aren't approved for the study." I remind her of the disaster MRI and she repeats the no lesions again. I tell her I had an MRI 3 weeks before that and had 3 lesions. "Did they just magically disappear?" (Yes, I did say that) She said, " I don't know anything about that and "head neuro" (that's what we will call him) wants to see you NOT Wendy." I asked "Why?" She didn't answer. WTF?!?!?!
The next day, the shock has worn off and I remember who I am and what I know, so I call Research back. I ask if the MRI the study performed was "MS Protocol" ? She said "Well it's an MS Study so I'm sure they did." I told her that doesn't necessarily mean they did. That a traditional MRI takes it's views of the brain in 6mm(I think mm) slices and an MS Prorocol does it in 3mms. She said she didn't know and I could ask Head neuro. I told her when I was dx 2 years ago i was told since I am so early in my MS that I needed MS protocol to view my lesions. She stumbled and said to wait to see him. Which lead to my next question: Why am I seeing Head neuro? Is it because he is the neuro for the study or for another reason. She stumbles and says he needs to discuss my history and my dx of MS because of the MRI. Damn. I knew it. They are gonna try to give me the stupid "you don't have MS speech.
What I don't get is why little Miss Research is being given so much power? That's fine. I know my history. I know my tests and the results. At least I won't be blindsided by this crap. In my heart I'm thinking I cannot do this again. But I have no choice. I study my history and wait for the appt. The day of my appt, i can hear Head neuro in the hall flipping through my file history for over 10 mins. I can't see through doors, but my suspicions are confirmed when I hear a nurse exclaim his name saying "There Head neuro is!"
He finally comes in and with a new PA. (Wendy was his old one & apparently is under another neuros rounds) He walks in and takes one look at my cane and says "Why do you have a cane?" "In case I lose my balance and to help me walk on bad days." He sits down and begins going thru my file again & starts to tell me how an MRI works and that MS lesions don't go away. He is about to start with the "you don't have MS", crap when I interrupt him.
"I just wondered how the lesions from 3 weeks ago suddenly disappeared from that MRI?" He asked when I had one and I told him. He starts flipping faster, so I go in for my next bite. Also, I was dx with Optic Neuritis last February when I saw my Optho-Neurologist. "Who did you see? Do we have those records?" Yes you do. Flipping again. "When Dr Beall dx me in August 2010, he explained I had to have my MRI done under MS Protocol and I don't know if the study's MRI did that." I explained how that MRI went. More flipping.
I am gonna stop this play by play and cut to the chase. He has stopped saying the you don't have MS speech and switched it to we need to repeat tests to PROVE you have it. I am also told he will be seeing me from now on and be hands on more than before. He orders more tests and tells me to come back. He is hoping to not have to repeat the spinal tap. All I'm thinking is how can I find Wendy to tell her what is happening. I try another location and she is on vacation. I leave a note and ask her to call me. She doesn't. Only because she doesn't know the urgency.
Meanwhile, I have a follow up with my Optho-Neurologist where I almost break down as he is the first member of my personal MS team I am allowed to see. I tell him everything and he tells me that he has documented that I have MS too. He tells me he'll do what he can to help me and try to get in touch with Wendy too. I feel a little better. I repeat the tests like a good girl and bite my tongue because as of now, this neuro controls whether or not I get my prescriptions filled and I am low on all of them. I push down all of my defiance and my panic and fear.
Follow up appt day arrives and my husband asks to go with me, but wants to wait in the waiting room in case I need him. He doesn't want to influence anyone by his presence that would work against me. If I need him to come back, I will send someone for him. As they take me back, we turn a corner and I run smack into Wendy. Wendy!! She happily greets me and I hug her and whisper if she got my card. She clearly doesn't understand what's happening until she stops and asks if I'm on her schedule. Her face shows she suspects I'm not, but doesn't know why. I tell her I was taken off her schedule and they are questioning my dx. She looks upset and tells the tech she wants my chart once my appt is over and tells me she'll definitely call me. I feel some relief as I go into my appt. This is brief.
New PA waltzes in. She has no test results and is alone. I question where the results are she goes to look. I am starting to get so angry. I update husband and tell him to still wait. She comes back and sits down to start telling me the "no MS" speech. I lose it. I finally break down crying. Not just crying though. I start yelling too. I tell her I don't understand why this one MRI negates my previous 11. I tell her that this all because of that Bitch (Research girl) that decides to play God cuz she's bored. I tell her I already went down this path 4 years ago and was dx 2 years ago by an MS Specialist. That they not only don't have my test results, which is why I am here today but the Head neuro can't come in the room. I ask where he is and am told he is at another clinic.
You know those cartoons where the persons head explodes through the top like a volcano? That was what happens next to me. I cannot believe you people are doing this to me. You have put me through the ringer for the past month and ignore all of my precious testing or other notes confirming MS. That not her or Head neuro has even examined me at all. That the last person to even touch me was Wendy and that Head neuro said he would be here from now on. And now he doesn't have the decency to be in the BUILDING. I'm not allowed to see Wendy because I'm supposed to see him, but I can see new PA?!?!? I'm not talking to you anymore. Get out! I want to talk to Wendy. Get her. Now!
They finally got her & by then I was an hysterical mess. She calmed me down and told me she had no idea what they were doing to me. She told me she needed me to be strong cuz now that the wheels were in motion she couldn't stop it. He is Head neuro afterall. She said she wished she could tell me I don't have MS, but I do have it. She said some neuros want everything in a nice neat package and we both know MS isn't like that. If it only took one definitive test than it would be easier on us all, but it is a collaboration of many tests and ruling out other dxs. She told me what to expect and what she would do to help. Eventually I can switch to whomever I want to see, but for now I have to see this path through. It has been so emotionally draining, but knowing Wendy KNOWS what is going on helps me to be strong. I feel less helpless and I can be patient.
I always tell people to be your own advocate. It is very important. No one knows your body like you do. No one knows your history like you do. No one will fight like you can. Trust the people you have around you and trust your own gut. Do what is best for yourself because if you don't it can be disastrous. Look how vigilant I am and I ended up in this mess. *sigh*
So, spinal tap for me on June 22nd and follow up with Head neuro on July 10th. Until then, pray for strength and that I can get off the bumper brain cars these idiots shoved me onto before mine implodes on impact. I'm exhausted. When I broke down in front of the PA for Head neuro, the flood of tears that built up for 5 weeks came pouring out. For almost 2 years before my official dx, I did this torturous ride. When my dx was confirmed it took some of the weight off my shoulders and lessened the pain. No one wishes for or wants to hear "You have MS", but not knowing is far worse than having an answer. Having an answer helps you to move forward with a health plan and hope for your future. I will NEVER give up being my own patient advocate or fighting against MS!! This week though, I think I'll take a quick break & maybe take a nap. Zzzzzzzz...