I haven't been writing lately because I haven't really had too much to say. I've been off the steroids since July 21st and I'm feeling a whole lot better. I haven't had any new symptoms at all. My left eye continues to be a problem with the optic neuritis, but that just feels like a normal part of life now.
I have a requisition for blood work so that I can start my daily medication soon, but I haven't quite mustered up the courage to get it done yet. I hate needles....a lot....so I've been avoiding the whole thing.
Emotionally I'm feeling quite good as well. This doesn't seem quite like the huge change to my life as it did the first few days. I'm still on a modified diet, with a cheat here and there. I think it's been quite good for me with my weightloss goals, so I'm pretty impressed with it. Also, I don't crave meat and cheese the way I used to so I think my body is getting used to this new way of eating.
Overall, I'm feeling optimistic. This is a much lighter and happier post then I've made in the past. It's nice to have some time between the present and the diagnosis. My perspective has changed a lot. :)
MS.Diagnosed.
Wednesday, 14 August 2013
Wednesday, 17 July 2013
The Dr's Seen it all
I have only had my diagnosis for five weeks. Some days I feel like I was diagnosed a year ago and some days it feels like yesterday. There is so much to learn and understand and research and decide. It's safe to say that my condition is still on my mind every couple of hours.
But that's what I have to work with. I have to remember it's only been a month! A month of thinking about something that will be with me for the rest of my life. I sometimes get frustrated and feel like I should have the answers by now. I should know how I'm going to handle everything, life moves on, let's not dwell. The reality is, it's not dwelling. I'm allowed to feel frustrated and scared and angry. I don't have to put on a happy face and act like everything is fine, just so others feel better about my condition.
I went to the neurologist yesterday. He's obviously seen it all. He knows what a textbook case of MS looks like and he knows that what I'm going through is normal. He doesn't downplay my condition but he's also very seriously not alarmed by what I'm reporting and really, that should make me feel better. If your doctor is freaking out about your condition, it's probably pretty serious and they're not used to seeing it. Laissez faire attitudes should really keep me calm.
The other side of me wants to be assured that nothing that I'm going through is normal. Your foot is numb!? Jesus! That's crazy. You can't feel your hand and your vision is gone?!? GTFO! Let's all acknowledged that what's going on is super shitty.
Obviously, I much prefer the medical equivalent of 'par for the course' but when it really boils down to it I'd rather have none of this. So I'll let the Dr. play it cool while I go bananas on the inside.
MS. Diagnosed
But that's what I have to work with. I have to remember it's only been a month! A month of thinking about something that will be with me for the rest of my life. I sometimes get frustrated and feel like I should have the answers by now. I should know how I'm going to handle everything, life moves on, let's not dwell. The reality is, it's not dwelling. I'm allowed to feel frustrated and scared and angry. I don't have to put on a happy face and act like everything is fine, just so others feel better about my condition.
I went to the neurologist yesterday. He's obviously seen it all. He knows what a textbook case of MS looks like and he knows that what I'm going through is normal. He doesn't downplay my condition but he's also very seriously not alarmed by what I'm reporting and really, that should make me feel better. If your doctor is freaking out about your condition, it's probably pretty serious and they're not used to seeing it. Laissez faire attitudes should really keep me calm.
The other side of me wants to be assured that nothing that I'm going through is normal. Your foot is numb!? Jesus! That's crazy. You can't feel your hand and your vision is gone?!? GTFO! Let's all acknowledged that what's going on is super shitty.
Obviously, I much prefer the medical equivalent of 'par for the course' but when it really boils down to it I'd rather have none of this. So I'll let the Dr. play it cool while I go bananas on the inside.
MS. Diagnosed
Friday, 12 July 2013
Insomnia
Tuesday was not a great day. I ended up leaving work halfway through the day because of a very wicked migraine and hand numbness. I had a lot of work to do, some big deadlines to meet that day, but I could barely keep my eyes open.
The hand numbness lasted about 24 hrs in total, but there is definitely residual weakness from the flare up.
Luckily, I work for my family. I called my parents and told them what was wrong. I think the distress in my voice was pretty obvious and everyone jumped into action for me. Calls were made to my neurologist. Thankfully, he was able to send a prescription to my pharmacy for Prednisone. So, for the last three days I've been on high dosages of that to help reduce the relapses that I'm having.
In other good news, the call the neurologist helped to score my an appointment for next week. Hopefully this means I can be put on some regular medication a bit sooner. I've had some ups and downs with my support for taking the drugs, but I really was never expecting to have this many symptoms so quickly. I need to get control of this so life can resume normally.
If this all seems garbled and incoherent it's because it's 3:41 am and I seem to have gotten the side effect of insomnia from these drugs. Thankfully the dosages start to taper off tomorrow and I can hopefully feel like myself again soon.
~MS Diagnosed
The hand numbness lasted about 24 hrs in total, but there is definitely residual weakness from the flare up.
Luckily, I work for my family. I called my parents and told them what was wrong. I think the distress in my voice was pretty obvious and everyone jumped into action for me. Calls were made to my neurologist. Thankfully, he was able to send a prescription to my pharmacy for Prednisone. So, for the last three days I've been on high dosages of that to help reduce the relapses that I'm having.
In other good news, the call the neurologist helped to score my an appointment for next week. Hopefully this means I can be put on some regular medication a bit sooner. I've had some ups and downs with my support for taking the drugs, but I really was never expecting to have this many symptoms so quickly. I need to get control of this so life can resume normally.
If this all seems garbled and incoherent it's because it's 3:41 am and I seem to have gotten the side effect of insomnia from these drugs. Thankfully the dosages start to taper off tomorrow and I can hopefully feel like myself again soon.
~MS Diagnosed
Monday, 8 July 2013
What Am I Afraid Of?
I prompted myself to write this post about a week ago. I felt that I was going to have so much to say about my fears for the future, but I just can't get into that mind set anymore.
I'm afraid, of course. I'm afraid of lots of stuff. I'm afraid of flying and crossing big bridges. I'm afraid of really wicked storms. Ultimately I'm afraid of the end.
If I had started to write this last week, as planned, the post would be about growing weak. It would be about being a burden to my family. It would be about potentially not having an income. It would be about being held back from doing things I dream of.
I'm still going to do the things I want to do. I'm just going to make sure to do them sooner than later. Going to Europe next summer, investing for retirement, buying a new house. At this point everything is still attainable. By doing the big things I want to do I'm freeing up time later to come up with new dreams, new things that I want to accomplish. Maybe my dreams for later will have to be a bit closer to home, but that's fine by me.
So, what am I afraid of? Nothing that I wasn't already afraid of before my diagnosis. Except, maybe, how I'm going to fund my European Extravaganza....time to start saving!
MS. Diagnosed
I'm afraid, of course. I'm afraid of lots of stuff. I'm afraid of flying and crossing big bridges. I'm afraid of really wicked storms. Ultimately I'm afraid of the end.
If I had started to write this last week, as planned, the post would be about growing weak. It would be about being a burden to my family. It would be about potentially not having an income. It would be about being held back from doing things I dream of.
I'm still going to do the things I want to do. I'm just going to make sure to do them sooner than later. Going to Europe next summer, investing for retirement, buying a new house. At this point everything is still attainable. By doing the big things I want to do I'm freeing up time later to come up with new dreams, new things that I want to accomplish. Maybe my dreams for later will have to be a bit closer to home, but that's fine by me.
So, what am I afraid of? Nothing that I wasn't already afraid of before my diagnosis. Except, maybe, how I'm going to fund my European Extravaganza....time to start saving!
MS. Diagnosed
Wednesday, 3 July 2013
The Phantom Itch
Here's a new and exciting symptom! I'm calling it the Phantom Itch. It started Monday July 1st in the evening. It's on my left arm and it's an itch just about where a t-shirt sleeve would end. It's insanely itchy but when I go to scratch it I can't pinpoint where the itch is originating and so I end up scratching or rubbing the whole upper arm. The second I stop scratching it's itchy again!
It almost feels like a hair is on my arm and tickling me. I'm getting all red and blotchy because I can't stop scratching. I feel as if this is heat related because I don't notice it at work where I have air conditioning. At home we don't have central air and I've mostly noticed this the last 3 evening when I'm sitting on the couch.
I don't want this blog to be a diary of complaining, but I am using this as a tool to keep track of symptoms for my next Neurology appointment in September.
Fingers crossed this isn't a symptom that lasts.
~MS. Diagnosed
Edited to add: I put an ice pack on the itching and it seemed to relieve the symptom.
It almost feels like a hair is on my arm and tickling me. I'm getting all red and blotchy because I can't stop scratching. I feel as if this is heat related because I don't notice it at work where I have air conditioning. At home we don't have central air and I've mostly noticed this the last 3 evening when I'm sitting on the couch.
I don't want this blog to be a diary of complaining, but I am using this as a tool to keep track of symptoms for my next Neurology appointment in September.
Fingers crossed this isn't a symptom that lasts.
~MS. Diagnosed
Edited to add: I put an ice pack on the itching and it seemed to relieve the symptom.
Tuesday, 2 July 2013
Why it's Hard to Spread the News
I've told very few people about my diagnosis so far. There are a few reasons that I'm holding back.
1) I've only had one appointment with my neurologist so far and I don't have a lot of answers. When you tell people about a diagnosis they have a lot of questions, and at this point I won't know what to say.
2) I've only had one appointment with my neurologist so far and a piece of me really hopes that at my next appointment he says, "whoops, I was totally off the mark. You're fine!"
3) There's no cure. I'm not starting a fight that will eventually be over and we can all celebrate. This is something that I'm going to deal with forever (If #2 doesn't come true...). I feel like bringing other people into this situation creates a scenario where they can't do anything to help and are burdened with knowing about my MS.
4) I don't want to create pity parties for myself.
5) I don't want it to seem like I'm seeking attention. My symptoms are fairly minor so far. People can't tell by looking at me and so why bother telling them at all?
At this point MS is in my thoughts all the time. It seems to me that keeping this a secret is a lot more difficult than just letting people know. So I think that I will start to spread the news, slowly.
In other news, the foot numbness that I had for over a week seems to be gone. Now, if only my eye would function normally. If I could see properly after 9 weeks of blurriness maybe I would be able to think about something else for a change.
~MS. Diagnosed
1) I've only had one appointment with my neurologist so far and I don't have a lot of answers. When you tell people about a diagnosis they have a lot of questions, and at this point I won't know what to say.
2) I've only had one appointment with my neurologist so far and a piece of me really hopes that at my next appointment he says, "whoops, I was totally off the mark. You're fine!"
3) There's no cure. I'm not starting a fight that will eventually be over and we can all celebrate. This is something that I'm going to deal with forever (If #2 doesn't come true...). I feel like bringing other people into this situation creates a scenario where they can't do anything to help and are burdened with knowing about my MS.
4) I don't want to create pity parties for myself.
5) I don't want it to seem like I'm seeking attention. My symptoms are fairly minor so far. People can't tell by looking at me and so why bother telling them at all?
At this point MS is in my thoughts all the time. It seems to me that keeping this a secret is a lot more difficult than just letting people know. So I think that I will start to spread the news, slowly.
In other news, the foot numbness that I had for over a week seems to be gone. Now, if only my eye would function normally. If I could see properly after 9 weeks of blurriness maybe I would be able to think about something else for a change.
~MS. Diagnosed
Friday, 28 June 2013
New Symptoms Creeping In
I've had my diagnosis for 17 days and only really had one symptom, which was my eye. I decided to follow the restricted diet that I found on the OMS website. As I said in my last post, this gave me the sense of having some control over the progression of my disease. If the diet can reverse symptoms in some people, then surely it would keep symptoms at bay for the newly diagnosed.
Not the case.
On June 21 my right foot started to go numb. The first indication was the third and fourth toes felt like they were asleep. I figured that it was the shoes that I was wearing. Maybe they were too tight; hopefully they were too tight. Unfortunately the tingling and coldness spread to the top of my foot as well. I spent the weekend at home, in bed, watching Netflix and feeling sorry for myself.
I also had a hard time coming to terms with the fact that this was a symptom at all. Isn't it convenient that I only got another symptom after diagnosis? Is my brain creating this sensation just because I know I have the disease and I'm looking for symptoms? It's been a week already and the numbness remains. So, I'm going to let myself believe this is real and that it's just a part of my new normal.
It's really hard to get my head around the fact that this disease is completely unpredictable. What works for me won't necessarily work for someone else. How I progress and the severity of my symptoms will be wildly different than the next person. You do what you can to stave off the symptoms, but when they increase it's a shot to the heart. What's the point? Why am I trying this? Can't I just eat cheese again!?
The answer is: I can't prove that this isn't working. Maybe if I hadn't been dieting and taking supplements my whole leg would be numb. Maybe the diet minimized the effect of this flare up. That's the thought that keeps me going. That's what get's me through the day of delicious temptation.
I can't prove that this lifestyle change is doing anything. I also can't prove that it's doing nothing. I can only go forward with the mindset that being healthier in my day to day life will not make me worse, and maybe hold on to the thought that I have any control at all.
~MS. Diagnosed
Not the case.
On June 21 my right foot started to go numb. The first indication was the third and fourth toes felt like they were asleep. I figured that it was the shoes that I was wearing. Maybe they were too tight; hopefully they were too tight. Unfortunately the tingling and coldness spread to the top of my foot as well. I spent the weekend at home, in bed, watching Netflix and feeling sorry for myself.
I also had a hard time coming to terms with the fact that this was a symptom at all. Isn't it convenient that I only got another symptom after diagnosis? Is my brain creating this sensation just because I know I have the disease and I'm looking for symptoms? It's been a week already and the numbness remains. So, I'm going to let myself believe this is real and that it's just a part of my new normal.
It's really hard to get my head around the fact that this disease is completely unpredictable. What works for me won't necessarily work for someone else. How I progress and the severity of my symptoms will be wildly different than the next person. You do what you can to stave off the symptoms, but when they increase it's a shot to the heart. What's the point? Why am I trying this? Can't I just eat cheese again!?
The answer is: I can't prove that this isn't working. Maybe if I hadn't been dieting and taking supplements my whole leg would be numb. Maybe the diet minimized the effect of this flare up. That's the thought that keeps me going. That's what get's me through the day of delicious temptation.
I can't prove that this lifestyle change is doing anything. I also can't prove that it's doing nothing. I can only go forward with the mindset that being healthier in my day to day life will not make me worse, and maybe hold on to the thought that I have any control at all.
~MS. Diagnosed
Thursday, 27 June 2013
Hurry Up and Wait
So, what do I do now?
The diagnosis happened. I sat in the Dr's office with my dad and my step-mom. They asked some questions and I listened to the Dr's answers. He handed me some pamphlets about drug choices and said we'd discuss at the next appointment. We shook hands and we left. The next appointment was scheduled for 3 months later.
3 Months? Shouldn't we start treatment now?
Apparently, there's no rush to start treatment so I get to go home and wait. I try not to really think about the diagnosis. I understand it. I'm just not ready to really process what it will mean for the future. I send out a few texts to people who were waiting for the results of the appointment. I even tell my husband, who is on a work trip, through text. I'm just not ready to say it out-loud. I tell my brother to start a read-a-thon for me. It's my only real connection with the disease. Reading novels in elementary school to raise a quarter a book for the MS Society.
I've got a mix of anxiety and impatience and so sitting around doing nothing doesn't really seem to be an option for me. Instead, I start a dialogue with a family friend who was diagnosed last year and I start to sort out what steps I'm going to take so that I can be as healthy as possible in my unhealthy state.
I'm no Dr. and I won't claim to understand the science behind 'why' I'm doing these things. I focus on the website www.overcomingmultiplesclerosis.org as a starting point and try to incorporate the following everyday:
1) Supplements: Fish Oil, Vitamin D (which my Dr. did say I should start), Calcium and B 12.
2) Diet changes: No dairy, meat or fats and oils. This has been hard. I've heard that many Dr's don't believe in an MS diet but I decide healthy eating can't make me any worse.
3) Meditation: 10-20 minutes a day of guided meditations from Youtube. Just time to turn off my brain and stay calm during all of this.
I know that eventually I will work exercise back into my routine, but for now I just feel too tired to imagine working out.
So maybe these changes aren't fixing anything and maybe they will have no impact at all. What I'm sure they are doing is allowing me to feel as though I have some control in this situation. Which I've learned can also lead to some heartache.
~MS. Diagnosed
The diagnosis happened. I sat in the Dr's office with my dad and my step-mom. They asked some questions and I listened to the Dr's answers. He handed me some pamphlets about drug choices and said we'd discuss at the next appointment. We shook hands and we left. The next appointment was scheduled for 3 months later.
3 Months? Shouldn't we start treatment now?
Apparently, there's no rush to start treatment so I get to go home and wait. I try not to really think about the diagnosis. I understand it. I'm just not ready to really process what it will mean for the future. I send out a few texts to people who were waiting for the results of the appointment. I even tell my husband, who is on a work trip, through text. I'm just not ready to say it out-loud. I tell my brother to start a read-a-thon for me. It's my only real connection with the disease. Reading novels in elementary school to raise a quarter a book for the MS Society.
I've got a mix of anxiety and impatience and so sitting around doing nothing doesn't really seem to be an option for me. Instead, I start a dialogue with a family friend who was diagnosed last year and I start to sort out what steps I'm going to take so that I can be as healthy as possible in my unhealthy state.
I'm no Dr. and I won't claim to understand the science behind 'why' I'm doing these things. I focus on the website www.overcomingmultiplesclerosis.org as a starting point and try to incorporate the following everyday:
1) Supplements: Fish Oil, Vitamin D (which my Dr. did say I should start), Calcium and B 12.
2) Diet changes: No dairy, meat or fats and oils. This has been hard. I've heard that many Dr's don't believe in an MS diet but I decide healthy eating can't make me any worse.
3) Meditation: 10-20 minutes a day of guided meditations from Youtube. Just time to turn off my brain and stay calm during all of this.
I know that eventually I will work exercise back into my routine, but for now I just feel too tired to imagine working out.
So maybe these changes aren't fixing anything and maybe they will have no impact at all. What I'm sure they are doing is allowing me to feel as though I have some control in this situation. Which I've learned can also lead to some heartache.
~MS. Diagnosed
Tuesday, 25 June 2013
My Diagnosis Story
I think the best start for this blog is to give some context around my symptoms and how I was diagnosed with MS.
I have a history of migraines. I don't get many of them, but when I do they are debilitating. My migraines come with intense pain, nausea, numb fingers and, more recently, visual disturbances. I had seen my GP a few times about the migraines but nothing serious was done. When the visual disturbances started I looked it up and read about ocular migraines. The symptoms fit the bill and they only lasted around 30 minutes so I really didn't worry about them.
Fast forward to April 24th, 2013. My best friend gave birth to her second child and I went to visit them. It was an emotional night and I didn't get that much sleep. The next day I went for a walk and started to notice my vision was blurring. I chalked this up to a migraine and finished my day at work. I took the next day off work because the vision issues were persisting. I spent the entire weekend in bed, with a patch over my eye because of the dizziness I got if both eyes were open. I then made an appointment to see my optometrist. I really feared at this point that it was an issue with my retina. The optometrist had a look and said the eye was fine.
I decided to see my GP to see if it was a migraine and if I could get a magic pill to make it all better. Apparently no such pill exists. He was uncomfortable with the fact that it had now been 6 days of visual issues. I was sent for a CT scan and had an emergency appointment with an ophthalmologist. Both of these appointments lead to the conclusion that it was a persistent ocular migraine. I went on vacation and learned to live with the vision issues.
I made another appointment with my GP for June 3rd as my eye was not getting better and I wasn't really satisfied with the 'migraine' diagnosis. I was put on the list for an MRI. I went to get my MRI on June 6th. I met with my GP on June 10th and he said that there was some evidence that it could be MS. I was sent to the Neurologist the next day and he confirmed the diagnosis that I did have Multiple Sclerosis. That was June 11th, 2013.
If the end seems a bit abrupt, that's because it was. A lot of lead time, a flurry of activity and a life changing diagnosis. I have to say that I think that was a relatively short amount of time to get a diagnosis. 47 days from the vision impairment to the diagnosis with 6 Dr's visits, a blood test, a CT scan and an MRI.
My next appointment isn't until September 11th when I suppose we will look at treatment options. Hopefully I've made a decision on how I want to proceed by then.
If you've made it this far in the post, I'm impressed. Give yourself a gold star! :)
Thanks for reading,
~MS Diagnosed
I have a history of migraines. I don't get many of them, but when I do they are debilitating. My migraines come with intense pain, nausea, numb fingers and, more recently, visual disturbances. I had seen my GP a few times about the migraines but nothing serious was done. When the visual disturbances started I looked it up and read about ocular migraines. The symptoms fit the bill and they only lasted around 30 minutes so I really didn't worry about them.
Fast forward to April 24th, 2013. My best friend gave birth to her second child and I went to visit them. It was an emotional night and I didn't get that much sleep. The next day I went for a walk and started to notice my vision was blurring. I chalked this up to a migraine and finished my day at work. I took the next day off work because the vision issues were persisting. I spent the entire weekend in bed, with a patch over my eye because of the dizziness I got if both eyes were open. I then made an appointment to see my optometrist. I really feared at this point that it was an issue with my retina. The optometrist had a look and said the eye was fine.
I decided to see my GP to see if it was a migraine and if I could get a magic pill to make it all better. Apparently no such pill exists. He was uncomfortable with the fact that it had now been 6 days of visual issues. I was sent for a CT scan and had an emergency appointment with an ophthalmologist. Both of these appointments lead to the conclusion that it was a persistent ocular migraine. I went on vacation and learned to live with the vision issues.
I made another appointment with my GP for June 3rd as my eye was not getting better and I wasn't really satisfied with the 'migraine' diagnosis. I was put on the list for an MRI. I went to get my MRI on June 6th. I met with my GP on June 10th and he said that there was some evidence that it could be MS. I was sent to the Neurologist the next day and he confirmed the diagnosis that I did have Multiple Sclerosis. That was June 11th, 2013.
If the end seems a bit abrupt, that's because it was. A lot of lead time, a flurry of activity and a life changing diagnosis. I have to say that I think that was a relatively short amount of time to get a diagnosis. 47 days from the vision impairment to the diagnosis with 6 Dr's visits, a blood test, a CT scan and an MRI.
My next appointment isn't until September 11th when I suppose we will look at treatment options. Hopefully I've made a decision on how I want to proceed by then.
If you've made it this far in the post, I'm impressed. Give yourself a gold star! :)
Thanks for reading,
~MS Diagnosed
Wednesday, 19 June 2013
Recently Diagnosed
I am a 26 year old female who was recently diagnosed with Multiple Sclerosis.
This is a disease that seems to leave the patient with a lot more questions than answers and so I decided to start this blog to help me track my research, remember the questions I have and share the information that I find. I've decided to modify my diet (more on that later) so I'll keep track of recipes here as well.
I was going to title this blog "learning to live with MS" but it just didn't feel right. I'm not looking to just live, I want to thrive. I'm working towards learning a new life that allows me to have the most and suffer as little as possible.
With the introduction aside, my next post will be about the process I went through to be diagnosed as having MS.
~Ms. Diagnosed
This is a disease that seems to leave the patient with a lot more questions than answers and so I decided to start this blog to help me track my research, remember the questions I have and share the information that I find. I've decided to modify my diet (more on that later) so I'll keep track of recipes here as well.
I was going to title this blog "learning to live with MS" but it just didn't feel right. I'm not looking to just live, I want to thrive. I'm working towards learning a new life that allows me to have the most and suffer as little as possible.
With the introduction aside, my next post will be about the process I went through to be diagnosed as having MS.
~Ms. Diagnosed
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