Aug 23, 2010
Entered gp's office at 7:45am. After weight, blood pressure and temp ck, doctor came in and we discussed results of various non-neurological related tests. All clear and she is chalking up left side mild, occasional abdominal discomfort as coming from my cysts on left ovary. I asked her about a recheck of my thyroid but she said no, even though at outter edge of normal she didn't want to reck until next year. How about diabetes test? She said already done, glucose is diabetes test. Oh, okay, no problem, felt dumb for a moment. Told her I was seeing neuro next and if I was diagnosed with anything neuro do I just see him for those issues and see her again next year for physical? She said yes and would get my file down to his office asap.
Entered neuro's office 8:45am and also had to do all the obilgitory numbers checks again. BP steady at 120/72, HR 64. Almost identical to gp's office stats an hour earlier. Neuro came in with lap top at 8:55. I did not take this as good sign that everything was okay with my spinal c and t MRI from last week. He commented (as everyone has) on the large purple bruise on my right lower inter arm. Told him from contrast injection from MRI. He said looked like they blew a vein.
Had trouble getting his laptop to work so we went out to kiosk area inside the inner offices. He went through several scans. My heart froze when he said, "And here is a lesion." He went through all images and commented on everything he saw, good and bad. I was trying so hard to concentrate on his words and every now and again I heard him but in my head I just kept thinking, OMG, I really do have MS. Good news is that if it weren't for lesions my spinal cord and vertebra are perfect. Bad news is that I have b/w 3 and 5 lesions, some active and some not.
We went back into the smaller exam room and he went over report and then said the words, "Based on these MRI's I am diagnosing you as having relapsing-remitting multiple sclerosis." I could scarely believe what I was hearing even though I already knew. Hearing it was so different than I had imagined. It was all I could do to not cry. He quickly talked about what RRMS is and said he had never personally had a patient who had episodes so widely spaced over the course of decades. He said this is a good thing and at this point I am where I want to be if one is diagnosed with MS. Funny I didn't feel that way but I knew what he meant. He said he was able to diagnose w/o lp b/c lesions both old and active but could order lp if I wanted. I declined.
We got my husband on the phone and doctor explained diagnosis and treatment. He asked if dh had any questions and dh seemed stunned and slow to respond but asked some q's which I cannot remember at this point.
Doctor mentioned new upcoming treatments for MS and said one just about to be released in a month or two. But also said way to early for him to consider putting any of his patients on it as it needed some road behind it.
Discussion of possible vitamin D link, which prompted him to write order for blood test on me. Said he would be seeing me every 6 months with repeat MRI's every year at least for 3 years. The purpose was to make sure not progressing and if so meds would be switched cause he fully expected them to work for me now. He picked Copaxone b/c side effects were the least severe and effectiveness is same as others with more severe reactions. He explained how Shared Solutions worked and had me sign paperwork and would fax in today.
He tried to be comforting in telling me my life span is virtually same as everyone elses and how he wouldn't recommend googling info on internet as it focused too much on the severe cases of MS. He would provide me with info and I could get more from official web sites he gave me.
I asked him about my children and their risk now that I am diagnosed. He said with my other family members not diagnosed they have slight increased risk but still very low (like I was and everyone else who gets this dx).
Off I went with a boat load on binders, books, pamplets and copies of my reports. Headed straight down to the car b/c I didn't want to sit in lab waiting room with arms full of books titled, "What comes after MS diagnosis." Grabbed a bag for fruit I had packed and headed back in to drop off solu-medrol (1000 MG solution) for four days and 8 diazepam pill perscriptions. Then headed to blood lab where it was so crowded people were waiting outside.
Finally found a seat and ended up talking to woman I use to work with 5 yrs ago. We hadn't seen each other in that long. She was there for annual blood work. Lucky girl I thought. About that time I looked down at the paperwork my neuro had given me and there it was, diagnosis MS checked off. I just stared.
When my name was called I went in and was greeted by a woman who told me her name but I didn't catch it and she was not wearing name tag. She was very friendly and got to work quickly. Offered her my left arm as right was recovering from MRI from last week. Needle went in well but blood not flowing well. She adjusted it several times. Oh boy, started to get a bit light headed just as she finished. Gosh, two months ago they took 6 bottles of blood and I was fine, this one just about knocked me out. Then it started to feel my head floating. The lab tech looked at me and said, "Stay with me Julie, don't pass out, I haven't had anyone pass out on me yet." Then black. Nothing. At one point off in the distance I heard someone yelling, then boom, I was back. My head was tilted way back and the lab tech was about 2 inches away from my face telling me to open eyes. I did and for a moment or two didn't realize where I was, like I had been woken from a deep sleep. Oh God, I thought, this is real, I am here in the lab and was just told 1/2 hr ago I have MS. It felt like it feels when you lose someone to death and at first you briefly are lost in sleep or thought and forget that you haven't lost them then WHAM, it all comes flooding back like new again.
They moved me to a recliner and gave me wet paper towels and juice to drink. Everytime I tired to get up, I just couldn't maintain my balance my head was spinning. I was hot and rubbing towels across my face and neck and the lab tech was waving papers at me trying to create a breeze. All the while other patients came and went getting their blood drawn, looking at me and wondering what the heck happened. My neuro's nurse suddenly appeared and she held my hand and apologized for having me wait over weekend for dx but that even though neuro had verbal, he didn't have written and he needed that to talk to me. It was okay I thought, the grief would have been the same, just sooner. Before I left I insisted on my copy of the paperwk my neuro had written up. I had to have it, not a doctored copy but my copy w my neuro's writing. It seemed important like a birth certificate or something. The document that officially states for the first time I have MS.
I left the lab an hour after blood draw but couldn't make it out of lobby. Lab tech found me sitting in lobby (she came to make sure I had made it out) and eventually brought me back upstairs to neuro's office. I told her that as her first pass out patient I was going to make sure she remembered me. She said that that would be no problem as she might even get my name tattooed on her.
My stay lasted alittle over an hour in the neuro's office. Neuro came in and said, "Julie, it was one bottle of blood." He was making a joke so I laughed alittle. He gave me some ice water and said to stay as long as I needed. The nurse came in periodically to ck my BP which sometimes read as low as 110/60. I was so cold that I could not stop shaking. What the heck I thought, get a grip girl, it's not like you didn't expect this. Finally at 12:30 when I realized I still wasn't getting to the point where I could see myself driving home, I texted a neighbor/very good friend who picked my up in record time. She insisted that nurse follow us down to car. At one point waiting for the elevator my friend remarked in an anxious tone that my lips were blue. I responded by saying "That's what they do when I am cold." She touched me and shivered. Every inch of me was like ice.
After collecting the literature in my car, we were headed home in her car. I told her dx and she started saying "No way!" I think she was most surprised that I had dx myself a few weeks back and was impressed I was spot on as she knows dx is hard to make (her sil has MS). She was also taken aback at the dx in general as I am guessing she thought it would be something readily treated.
Got home and she got me settled and walked the dogs for me. When she came back she sat with me while I was in bed trying not to get sick. Our discussion was sweet actually. Several times we kind of cried (you know how that is). Topic of course included a lot about dx but also kids and houses, as we had finally found our dream house after years of looking. Told her bitter sweet as it was, it just wasn't practical with this dx to move into such a large house on that much land right at this moment. I needed to soak in what was happening and focus on self not on new house and selling current one. Yep, this was one of the first changes that I realized would effect my life due to dx. I think she was actually relived we were putting it on hold as she didn't want me to move from our shared neighborhood.
Shared Solutions had left message for me to cb before I had even gotten home from hospital. Wow, they said neuro had faxed all docs to them and they wanted to get it started asap. Good I thought, no sense in waiting.
At 2:30 I suddenly felt fine we were about to head back to hospital to collect my car and my perscriptions when the pharmacy called to say my neuro had requested they deliver meds to me. I declined and said on the way now.
Pharmasist very friendly and helpful explaining how it all worked and side effects when I got there and offered suggestions on how to tolerate bitterness.
After I got home for second time, our air conditioning guy show up at house to ck out old unit my dh had called him about a few days before. Oh please, not sure I can handle this right now. Phone ringing again, it's my local SS nurse Nicolette to introduce herself. "How are you doing?" she said. "I have seen better days" was my response. She seemed surprised until she realized I had just be dx that morning.
My head is still pounding and I have had a ton to drink. Neuro and Pharmacist rec'd that I not start solu-medrol until morning as it will make me feel jittery. So this thing I have been reading about in medhelp is now what I am taking along with Copaxone. Wow, didn't even know what these were a month ago.
My sister comes in for a quick visit on Friday. I will tell her then. Thinking I should fly out to see parents in next couple of weeks as it will be December until I see them for the holidays. Feel that I will be telling some friends and my children and word will get out. Really don't want them to be the last to know and I am not sure doing it over the phone is appropriate.
Dh comes home late tomorrow night and we will tell kids the next night. They already know about all the tests and I told them got a dx today but that we would discuss as family in a couple of days. I wasn't making dinner tonight so fend for selves. They seemed to take in stride as this was their first day of school and are already preoccupied.
I know I haven't written a lot about feelings here tonight but honestly I don't feel like I have processed this. MS. I have MS. It's official. I have probably had it for 20 years and didn't know it. Wow....can't comprehend. Maybe tomorrow it will start to sink in. Tonight I am asking God for wisdom to understand what this all means. I know I cannot let my emotions get in the way of my faith. God is greater than any giant I will face here on earth, so I must face this giant with determination and with the knowledge that God has my back. That isn't a promise that I will get what I pray for (like I had to say that!) but that He will not leave me and watch over my heart and soul b/c I belong to Him.