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
Friday, 28 June 2013
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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