MS Journey

I think I had a post a long time ago that described some of what I went through before my final diagnosis but I thought I'd get more detailed about the symptoms that led to my diagnosis since, in my experience, that's the most common question I get when someone finds out I have Multiple Sclerosis. 

I think I have to start with migraines. I didn't realize migraines could be associated with MS but apparently it is fairly common to be misdiagnosed as having Migraines when, in fact, it's Multiple Sclerosis.  I had migraines even at a young age. They worsened and got more frequent as I aged. I used to tell people that my brain hated me.  

From there, I really had no other symptoms until my mid-20's. Looking back now I recognize the signs but at the time I just thought I was over-worked. I yawned a LOT. Excessive yawning is one of the symptoms of MS. My parents used to comment about it frequently - concerned that I wasn't getting enough sleep. But I was! Often on Saturdays I would sleep late, wake up to use the bathroom and feel so exhausted that I went back to sleep. I could sleep an entire day, only waking up to use the bathroom or get a drink of water and a snack. Then I would sleep all night.  

Those were all early signs for me but, keep in mind, every person with MS has a different set of symptoms.  No two have exactly the same experience and there are different MS versions as well (RRMS, PPMS and SPMS). I think the reason most people ask about my symptoms is that they have (or know someone who has) had symptoms of one sort or another and are concerned they might also have MS. It's a valid concern - especially given the fact that there is a bigger percentage of people living in the Pacific Northwest than in almost any other region in the United States.

Anyway, I was working for a Statistical Research company as a Project Coordinator on an atrial fibrillation clinical trial. My job was to keep track of over 200 clinical sites around the country and in Canada. I planned the meetings, coordinated the publications and regular mailings and a variety of other tasks. It was fast paced and demanding which is why, when I started having difficulty dialing a push-button phone, I thought I was just on burn-out. I mean, I was engaged to be married at that time as well and planning a wedding and a move across the country. I certainly had every reason to be tired and stressed. I could do everything else but I could barely dial a phone. I would start dialing a number and would have to hang up because my finger would push the wrong number at some point and I would have to start over and over until I FINALLY got it right! That was close to the end of my time there. I was looking forward to new adventures as a newly married woman in a completely new part of the country, hopefully working at a job that was lower stress so I could catch my breath.

I quit my job and moved in with my parents a couple of weeks before the wedding. Once, while on a walk with my parents, my ankle just gave out and I couldn't catch myself- I fell to the ground and ruined one of my favorite pairs of pants.  I didn't trip or anything, I just fell suddenly. I shrugged it off as a weak ankle from a volleyball injury. 

After we were married and I got moved out to Pennsylvania where my husband was living at the time, I found a job as a secretary to the Director of the Emergency Care Unit at the local hospital.  A job that I enjoyed and that was much less demanding. I found that a slower pace of life really seemed to help and I started slowly gaining my phone dialing ability back.  

I started noticing at some point that I would get dizzy and lose my balance if I looked up at the sky while on a walk. We moved to New Mexico less than a year after we were married and the pace slowed considerably in the small town where we lived. I felt like I had gotten enough rest by the time we moved to Arizona and I was ready to pick the pace back up. We bought a house and I got a job as a legal secretary which I really enjoyed.  

We moved back home to Washington 2 years later. I got another legal secretary job and a year later we bought a house and I had taken a better job at a bigger law firm. I was feeling great! And then, shortly after we had moved in to our new house, I lost partial feeling in the entire right half of my body. I lost maybe 10% feeling - but it was like my body had been cut in half. Even half my tongue had lost partial feeling.  It's an odd sensation.  I went to see my doctor who sent me in for an MRI - this was in 2004. The MRI was inconclusive but the Radiologist had seen a lesion and they suspected MS.  

The only experience I had to that point with MS was my husband's neighbor who had MS and was wheelchair bound. We had just bought a 2-story house with 16 stairs leading up to ALL the bedrooms and the only showers in the house. I was referred to a neurologist who couldn't find the lesion and, after a neurological exam, dismissed MS as a possibility and told me it was probably a virus and the symptoms would go away.  He told me that if I had MS, there would have been an episode in my past like going blind for 3 days or something similar.  Since there was no event like that in my past and he couldn't think of anything in the brain that could cause half my body to lose partial feeling, he concluded I had a virus, not MS.  

My symptoms DID go away except for one spot on my neck. We breathed a sigh of relief and moved forward with our lives. When I was pregnant with our daughter, I was working and studying for the PLS (Professional Legal Secretary) exam. After I took the exam, I had lost feeling in both my legs so they gave out on me while walking down the stairs to head to the bus. I fell and slid down the stairs on my shins. The previous year. While working at a different firm I had done the same thing. This falling thing was becoming a habit!

Thankfully, having a baby must have agreed with me because my migraines were cured!  But I fell again on our first Sunday back at church after our daughter was born. Thankfully, my husband was carrying our baby girl as my ankle gave out and I failed to keep myself from falling and hitting the side of the church (and denting the downspout) on our way in.

When I was pregnant with our son, I was still working and my parents were babysitting our daughter.  I would drive to their house in the morning and drop our daughter off along with our car and then walk to the bus stop and ride the bus in to work. One morning when I was about 6 or 7 months pregnant, my ankle gave out and I fell hard! Thankfully, the baby was unharmed but I could barely walk. I injured my ankle and left knee really badly. My knee injury took a long time to heal up after our son was born - I couldn't put any pressure on it - no crawling around on the floor with the kids.  It did eventually heal but when our son was about 2 years old, I started feeling tingling and reduced feeling below my left knee. I chalked it up to nerve damage caused by the injury to my knee. Around the same time I started experiencing bladder issues which I chalked up to 2 pregnancies and c-section deliveries.  

This falling thing was becoming problematic. I sprained my ankle and fell while playing frisbee with my husband and kids and fell again a couple of months later just walking around in our back yard moving the sprinkler and I fell yet again as I was leaving the appliance store after we bought a new refrigerator. So, I talked to my doctor and ended up consulting with a specialist who told me that my ligaments were loose in my ankle and I needed surgery or at the very least, physical therapy to strengthen the muscles in my ankles. I chose the physical therapy route and was also given an ankle brace to use when participating in higher risk activities like playing soccer or frisbee on uneven ground.

At Christmas time in 2013 we took the kids to the mall to do our Christmas shopping.  My husband was off getting gifts for me and I had the kids (ages 2 and 4 1/2 at the time). I was supposed to be shopping for my husband and for all of our extended family members.  But as I stood in the middle of the mall with the stroller and a toddler by my side, I felt completely overwhelmed and I was unable to figure out what to do next.  

Then I started having difficulty communicating with my husband at night. He is a real talker and I used to be. But it was getting increasingly more difficult for me to participate in conversations late at night. I was always a night owl but suddenly I couldn't stop yawning and had to sit down and couldn't get words to formulate in my mind. Fatigue! My husband didn't understand why I couldn't carry on a coherent conversation with him at night. And I didn’t understand either!

MS is really hard on the families. I would argue that my husband struggles more with MS than I do.

I decided to talk to my doctor about all of these symptoms at my annual exam. But she told me that I would have to schedule a different visit for each symptom I was experiencing and to just pick the one that bothered me the most to talk about at that visit.  So we talked about my bladder and she concluded it was a result of the pregnancies and c-sections and suggested surgery or medication. 

Well, with 2 toddlers at home I wasn't about to schedule multiple visits- I just didn't have that kind of time. Nor did I have time for surgery so I just decided to cope with things as they were. Especially with 2 young kids and a husband who travels. 

However, one day our whole family was walking (swiftly) through Lowe's and I lost feeling in BOTH of my lower legs and feet. Looking online, I found that the explanation for all of my symptoms could be Multiple Sclerosis- but that had been ruled out! My husband told me I should go see HIS doctor who was more of an old-school physician who would be more willing to spend time listening to my list of symptoms. 

And he was right! This doctor DID listen and he decided to send me in for another MRI because, while he didn't think I had MS, he said I was "the right age, the right gender, lived in the right region and had enough concerning symptoms." The MRI was inconclusive and the doctor called me at home to discuss the results.  He still didn't think I had MS but he didn't want me to worry so he sent me to a neurologist.  THIS neurologist looked at my brain scan and said there weren't enough lesions to diagnose MS and she really thought it was a pinched nerve so she sent me in for a comprehensive MS protocol MRI of my brain, cervical spine and lower thoracic area. After a 3 hour MRI with contrast dye, she had to admit that I did, indeed, have MS. Most of my lesions are in my cervical spine.  She sent me to an MS specialist who confirmed the diagnosis and, after reviewing my MRI from 10 years earlier, she could see the lesion and said that of all my symptoms, that event 10 years prior had been the most obvious symptom of MS.  

I was officially diagnosed with MS in April of 2014 with Relapsing Remitting Multiple Sclerosis (RRMS). At the time the symptoms were very minor and didn't hinder my mobility in any way. I could still run and keep up with my toddlers, for instance. I have said it in previous posts but I will say again that I was RELIEVED to have a concrete diagnosis that explained everything and I was eager to get started on a treatment plan.

I went on an injectable medication called Avonex right away but had a drug failure after a year.  I lost partial feeling (50% this time) in 2 1/2 fingers and the inside half of my lower left arm (I have never regained feeling there) and I started having significant heat intolerance (In temperatures above 80 degrees I would start to lose my vision and it wouldn't return until I cooled off.) So, I switched to a new medication. Gilenya, a daily pill. No medication will cure MS. But they are supposed to slow the progression.  Gilenya is doing a pretty good job. I have had stable MRI results for the past 10 years. But I AM progressively getting worse - just very slowly, thankfully!

Now I have an intolerance to the cold! I feel cold all the time - but unevenly throughout my body. My left side is pretty much cold to the touch all the time. Hot showers are therapeutic for me and that is my favorite activity - until it’s time to get out of the shower, get dried off and dressed!

Because most of my lesions are in my spinal cord, there is less that can be done to alleviate my symptoms. Thankfully, I have no MS associated pain! I have the opposite problem - I am losing feeling everywhere. Almost every part of my body is experiencing some degree of loss of sensation. Thanks to one big lesion affecting the nerve that supplies feeling and other signals to the left side of my body, I have probably lost about 70% of the feeling in my left arm, hand, leg and foot. I am also itchy all over my body - especially my head, face, arms and hands. Itchiness, I have discovered, is the first sign (at least in ME) that I am starting to lose feeling in that area. It’s so weird when my lips start itching and losing feeling - usually at night when I have had a busy day and am extra fatigued.

So, to explain most of the falling… Essentially MS attacks the nerves that send signals to various parts of the body. In the case of my left ankle, my ankle has lost contact with my brain. It can’t move - it no longer receives those signals so it just hangs there when I lift my leg - I have a foot drop when I walk because I can’t move that ankle. I drag my toe and trip frequently and when my weak ankles give out, the signal from my brain to my legs that SHOULD help me hop back up and keep me from falling, is slowed down by the nerve damage caused by MS and it doesn’t travel fast enough to be effective so I can’t catch myself. I fall like a homesick rock! My fatigue plays a big part in this. On good days I hardly limp at all. But most days there is a noticeable limp and when I have a lot of walking to do, I now use a cane that I keep in the car (which I only use if I don’t have a shopping cart to use for support). Praise God for disabled parking spots and permits to use them!

Regarding the bladder issues - I have gone through testing with a Urologist to find out what's going on with my bladder and discovered that MS has caused me to have a Neurogenic bladder. Essentially this means that my bladder is working overtime to keep all liquid trapped inside - especially when it is empty! I am thankful not to have urinary incontinence but it is really a drag that it takes so much time and effort sometimes just to urinate! Is this grossing you out? I hope not. It’s my reality and one of the aspects of MS that people don’t like to talk about. Anyway, I have difficulty emptying my bladder fully - especially when I am short on time. So if I am in a hurry, I need to either just take the time to make sure I get my bladder fully emptied (which could make me late or irritate others who might be waiting for me) or else there had better be a restroom at my destination because I am likely going to need it as soon as I get there. It is reminiscent of planning an outing with a toddler who is potty training. My doctor tells me that when it starts to become a bigger problem I will have to start using a catheter. It is going to have to be a REALLY BIG problem for me to be willing to do that! For now, it’s just annoying. And like the foot drop, fatigue plays a big role in how problematic it is on a given day.

Now, on the fatigue issue. They say that it takes 5x more energy for a person with MS to do everything than it does for a healthy person. My doctor explained that even processing words and formulating responses takes a greater effort and is fatiguing. Walking without tripping takes conscious effort. Getting dressed in the morning is more difficult - especially with a leg and ankle that doesn’t cooperate. Try pulling on a pair of pants without moving your ankle - your toes keep getting caught on the inside of the pant legs! Try pulling on a pair of shoes or especially rain boots without moving your ankle - you can’t point your toe! When every minor task I used to do without giving it a thought becomes a major difficulty it can be easy to just sit down and refuse to participate or to procrastinate! So by the time the evening rolls around, my brain has had enough. It starts the shutdown process and humor and communication skills are the first to go.

Now, I tell you all of this just for information and to answer common questions. Please don’t feel sorry for me! Definitely pray for me and my family but don’t think that I am, for one second, complaining about my lot in life. Make no mistake, I view MS as a huge blessing in my life and if you read my earlier post about that very subject you will understand why. I praise God every day for the blessing of MS because it has drawn me closer to Him!