I feel like singing from the trees or at least through the library stacks :) Just met with a second neurologist--she was great! My family doctor had recommended the Waddell Center which is part of UC. In order to get an appointment with them I had to fax all my records and then they had to be reviewed And Then I was able to make an appointment. Since today was the soonest appointment I also made the appointment with the first guy since he had sooner openings. But after that horrid visit I really wanted to wait to start treatment until I met with this doctor. I'm so glad I did!
She was wonderful. I kept all my clothes on--except for my shoes and socks. We looked through my MRIs and she explained what we were seeing. She really wasn't overly concerned by what she saw, said my brain showed very few lesions. There was a larger one on my right side but said it looked consistent with MS. I guess if I had any problems with balance that lesions might be at fault, but I'm not really. There were lots of lesions on my spinal cord in the thoracic area. Mostly the spinal cord looked like wisps of smoke were running through it. She explained though that the amount of lesions does not correlate with the severity of the disease. Obviously less is better but she's seen people with a heavy lesions load and no symptoms while others have few lesions but lots of problems. Crazy disease!
She recommended we start on the disease modifying drugs soon. And when I asked her about breastfeeding and drugs she said it would be fine to wait until I'm finished breastfeeding as long as I start the drugs in a few months. So I'll talk to Xander's docs on Monday but I think if we wean him around a year--what I was planning anyway--then I'll start on betaseron after that. Yeah! No emergency, fast weaning. No need to to worry about bottles and formula etc :) Breastfeeding is just so easy and so much a part of what we do. Part of me was sad at the thought of stopping it and part of me didn't want to add new routines and hassles to our lives--when we're going to be adding new stuff anyway.
She recommended Betaseron as perhaps the best drug for me. It is injected subcutaneously every other day. My dad is on it and he has had good luck with it. The main side-effect is "flu like symptoms" which is now only in 60% of people or something like that--with my luck I'm just counting on that. But she said there are things that can be done to alleviate this and it only lasts for 4-6 hours after the shot. And it is supposed to get better after 2-4 months on the shot.
In one month I have an appointment with the nurse practitioner to explain in more detail about the drug and ms. (So much nicer than the big binders I was handed by the first doctor!) Then we'll fill out all the paperwork and I guess a nurse from the drug company comes to your house to teach you how to inject yourself. Since I was looking to breastfeed about 2 more months she said that by the time we went through all the paperwork and insurance stuff it would probably be that long.
The first doctor left me with this big feeling of urgency and advancing disease. Dr. Melanson made me feel much more calm. I feel as if I have this thing but it's going to be more of an annoyance than anything. She recommended staying healthy--avoiding people who are sick. Any kind of an infection, sore throat, cold, uti all can cause my immune system to go into action and ms symptoms can result. She even had a word for this type of reaction which wasn't considered a full relapse usually. I kind of wonder if this is what happened at Christmas because I had some 24 hour virus before everything started.
As far as diet she recommends a healthy diet, a multi-vitamin, and getting enough omega-6 & 3s. Since both boys love fish we're currently working on this one. This week we're going to try a curried cod with spicy yogurt sauce--I picked up a Rachel Ray cookbook at the library :) Dr. Melanson was happy to hear about my yoga class and I'm going to really try to fit in another class or two because exercise is also important.
I know it's a chronic condition and all but I just feel so much lighter and happier. Happy happy day :)
Thursday, February 14, 2008
Thursday, February 7, 2008
Waiting
I'm waiting for my second opinion. The first doctor was ok, but his nurse was pretty awful. I found out from them that I have active lesions and a lot of them in my brain and along my spine. He suggested starting on the "disease modifying drugs" as soon as possible. But I decided to wait for my second opinion and to give me time to figure out what to do about breastfeeding. So I've been researching, talking to lactation people, my family doc and we'll also talk to Xander's doctors.
Dr. Reed said that the active lesions suggested to him that "something big was coming" he was kind of surprised that I was doing as well as I was. So he also said that maybe I would keep being fine. This is a very frustrating disease!
So I wait until my appointment, February 14. I've talked to the coordinator who said usually it's not so busy and there is a nurse who you can get into see quickly once you are an established patient. She described the nurse as a real sweetheart--which is pretty much the opposite of the first nurse I saw. I think I'll be starting on drugs, I'm guessing betaseron or copaxone. I've been trying to learn a little about each one. Betaseron is an injection every other day and copaxone is everyday. I kind of like the idea of everyday because you can't forget as much also copaxone doesn't have "flu like symptoms" as a side-effect. My dad has been on betaseron for over 10 years and has had few problems. It's stronger and works faster than copaxone so because of all the active lesions maybe it would be a better choice for me.
Both of them aren't cures they don't treat the "attacks" or "episodes" like I had over Christmas. They supposedly lesson your chances of having episodes and keep new lesions from forming so that hopefully you won't become disabled by the disease. Funny that I can use that word here and not when talking about Xander. I guess here it is a possible future that I'm hoping to avoid. with Xander, he's my baby and in the present. I haven't officially been diagnosed with a "type" of ms and may have to have a spinal before even getting an official ms diagnosis. (the spinal tap rules out other diseases that might possibly be causing lesions and it also shows if there are proteins (or some other thing) that have crossed into the spinal fluid that are another positive sign of ms. the spinal tap, plus mri, plus history/symptoms can give a positive ms diagnosis). I'm guessing I have relaxing/remitting ms which means symptoms come and go. this type often eventually becomes progressive where the symptoms don't go away and new ones keep coming. At least this is how I understand things and why I need to get on these drugs so that my body attacking nerve connector thingys and parts of my brain will stop. The damage that has been done can't be undone but the hope is to prevent new stuff.
Dr. Reed said that the active lesions suggested to him that "something big was coming" he was kind of surprised that I was doing as well as I was. So he also said that maybe I would keep being fine. This is a very frustrating disease!
So I wait until my appointment, February 14. I've talked to the coordinator who said usually it's not so busy and there is a nurse who you can get into see quickly once you are an established patient. She described the nurse as a real sweetheart--which is pretty much the opposite of the first nurse I saw. I think I'll be starting on drugs, I'm guessing betaseron or copaxone. I've been trying to learn a little about each one. Betaseron is an injection every other day and copaxone is everyday. I kind of like the idea of everyday because you can't forget as much also copaxone doesn't have "flu like symptoms" as a side-effect. My dad has been on betaseron for over 10 years and has had few problems. It's stronger and works faster than copaxone so because of all the active lesions maybe it would be a better choice for me.
Both of them aren't cures they don't treat the "attacks" or "episodes" like I had over Christmas. They supposedly lesson your chances of having episodes and keep new lesions from forming so that hopefully you won't become disabled by the disease. Funny that I can use that word here and not when talking about Xander. I guess here it is a possible future that I'm hoping to avoid. with Xander, he's my baby and in the present. I haven't officially been diagnosed with a "type" of ms and may have to have a spinal before even getting an official ms diagnosis. (the spinal tap rules out other diseases that might possibly be causing lesions and it also shows if there are proteins (or some other thing) that have crossed into the spinal fluid that are another positive sign of ms. the spinal tap, plus mri, plus history/symptoms can give a positive ms diagnosis). I'm guessing I have relaxing/remitting ms which means symptoms come and go. this type often eventually becomes progressive where the symptoms don't go away and new ones keep coming. At least this is how I understand things and why I need to get on these drugs so that my body attacking nerve connector thingys and parts of my brain will stop. The damage that has been done can't be undone but the hope is to prevent new stuff.
Tuesday, February 5, 2008
How it all started . . .
I guess it was around Christmas, I noticed my toes kind of went numb and it traveled up my legs. This had happened in the past so I didn't really take too much notice. As the days went on though it kept getting worse, I had a tightening around my midsection and then some problems with balance. As we drove home from Christmas I developed a limp. It only lasted for two days but worried me enough that I decided to call my doctor. I got an appointment for Monday, December 31 and decided to keep the appointment even though I was walking better by then.
The doctor wasn't my usual doctor (who I had only met once) but she listened to my symptoms, took my history (dad with ms), and noticed that one leg was weaker. She suggested I get an MRI. So I scheduled that for January 4--great way to start the new year! I didn't really get a chance to ask what she thought could be causing all this, she kind of just left the room and I had all these questions in my mind. I was kind of hoping it was something to do with my back which had been bothering me. Maybe a pinched nerve.
I had a really extensive MRI done on my head and spine. I turned down doing it with contrasting agent because then I would have to stop breastfeeding for 24 hours. The doctor called me the following Monday--as I was eating dinner at work--to tell me that it looked as if I had MS.
I felt like the world had collapsed. But I composed myself and finished working for 3 more hours by myself--mostly I read online about MS. I didn't call Dennis because I knew I couldn't make it through the night or the drive home if he knew. I somehow didn't want to tell him because I knew it would change our lives and once he knew he couldn't unknow it, just like I couldn't.
My family came for Dominick's birthday on the weekend. It was so great to have their support. My parents have been dealing with MS for 15 years or so. My brother and his wife were also dealing with uncertain medical stuff--which so thankfully turned out ok but that weekend we were all in this same uncertain, scared, confused boat. Felt good not to be alone.
I finally jumped through what felt like lots of hoops but got an appointment with a neurologist who specialized in MS and could see me January 21. My doctor recommended the Waddell center which is connected with University of Cincinnati. They had many more hoops to jump through and after overnighting films and talking to it felt like lots of people I got an appointment there for February 14. It is just so hard when starting out with doctors, I hate all the hurdles which they throw at you when you can handle them the least. Or maybe it's all part of the plan because you just get mad dealing with the bureaucracy and you don't have the time to think about the other bigger things.
The doctor wasn't my usual doctor (who I had only met once) but she listened to my symptoms, took my history (dad with ms), and noticed that one leg was weaker. She suggested I get an MRI. So I scheduled that for January 4--great way to start the new year! I didn't really get a chance to ask what she thought could be causing all this, she kind of just left the room and I had all these questions in my mind. I was kind of hoping it was something to do with my back which had been bothering me. Maybe a pinched nerve.
I had a really extensive MRI done on my head and spine. I turned down doing it with contrasting agent because then I would have to stop breastfeeding for 24 hours. The doctor called me the following Monday--as I was eating dinner at work--to tell me that it looked as if I had MS.
I felt like the world had collapsed. But I composed myself and finished working for 3 more hours by myself--mostly I read online about MS. I didn't call Dennis because I knew I couldn't make it through the night or the drive home if he knew. I somehow didn't want to tell him because I knew it would change our lives and once he knew he couldn't unknow it, just like I couldn't.
My family came for Dominick's birthday on the weekend. It was so great to have their support. My parents have been dealing with MS for 15 years or so. My brother and his wife were also dealing with uncertain medical stuff--which so thankfully turned out ok but that weekend we were all in this same uncertain, scared, confused boat. Felt good not to be alone.
I finally jumped through what felt like lots of hoops but got an appointment with a neurologist who specialized in MS and could see me January 21. My doctor recommended the Waddell center which is connected with University of Cincinnati. They had many more hoops to jump through and after overnighting films and talking to it felt like lots of people I got an appointment there for February 14. It is just so hard when starting out with doctors, I hate all the hurdles which they throw at you when you can handle them the least. Or maybe it's all part of the plan because you just get mad dealing with the bureaucracy and you don't have the time to think about the other bigger things.
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