MS Diagnosis: What a relief!
I’m sure some of you have experienced a sense of relief when you finally got your diagnosis. But my relief goes beyond that – I’m genuinely thankful. How crazy does a person have to be to be thankful for multiple sclerosis? I’m not saying that I’m glad I have MS. But I’ve had MS for close to 20 years probably and was only diagnosed in the Spring of 2014.
I was married in 1999 and my symptoms were insidious. They were so gradual that my husband thought I was changing my personality on purpose and that my inability to stay up late and discuss serious relationship issues was my way of telling him I didn’t care about him enough to stay up and hash things out. He didn’t understand and thought he was to blame and I didn’t understand either, frankly.
I first started having trouble with motor skills like dialing a push-button phone. That actually got better when I switched jobs and reduced the stress in my life. I thought I was just burned out. We moved several times around the country and I was always able to find work and I was very capable. But I started to fatigue easily and just physically could not stay awake late into the night to do ANYTHING, let alone have a major relationship discussion. My brain was mush by 9pm and at midnight, I was a mess.
I knew something was wrong with my brain but I just had no idea what it might be and I didn’t think it was serious. I thought it would get better if only I could eliminate the stress from my life.
In 2005 I lost partial feeling down the right half of my body – tingling and about 10% loss of sensation. It was like my body had been cut in half – even half my tongue lost partial feeling and started tingling. I went to see a doctor who sent me in for an MRI that showed 1 lesion but the MRI resolution wasn’t very good and when I went to see the neurologist I had been referred to, he couldn’t find the lesion and said he thought it was probably an artifact and that I didn’t have MS. He said it was probably a virus because he couldn’t think of anything in the brain that would cause exactly half my body to lose partial feeling and if I had MS, I’d have had a period in my life when I had a major event like blindness for a few days or something like that. Well, this WAS my major event. My brand of MS doesn’t involve my vision (except in the heat). I was thankful that I didn’t have MS though and the tingling DID end up going away – mostly. When I was finally diagnosed in 2014 my doctor said that the symptoms from 2005 were the most concerning of all of the symptoms I told her I was experiencing or had experienced in the past.
I resumed my life as if I was perfectly healthy but it really took a toll on my marriage. My husband became increasingly agitated and unhappy with me and I felt helpless and misunderstood.
In 2013, I went Christmas shopping with my husband and kids. My husband went on his own to shop for me and I was supposed to shop for him and my family with both kids in tow (a 1 year old and a 3 year old at the time). I stood in the middle of the mall feeling completely overwhelmed and wasn’t able to do much shopping that day. I was exhausted and overwhelmed so I just sat down and waited for my husband to be done shopping so we could go home.
Later that month, I went to see a doctor for my annual exam and decided to bring up some of the issues I’d been having – bladder issues, constipation, fatigue, tingling in my left leg, etc. But she told me that she couldn’t discuss all the issues at this visit – that I’d have to make separate appointments for each symptom because of insurance billing codes. None of the issues were so bothersome that I felt I needed to make separate appointments – especially with a 3 year old and a 1 year old, a husband who travels and very little babysitting support.
In early 2014, we were walking in Lowe’s at a fairly quick pace from one end of the store to another and I lost partial feeling in both lower legs and feet and started feeling some weakness as well. My husband told me to get right in to see HIS doctor who is close to retirement and is a very good doctor. I took an online quiz to see if I could determine if my new symptoms were connected and related to MS. Guess what? I diagnosed myself online and went to the doctor to confirm it.
The doctor I saw said he didn’t think I had MS but that he was worried about me worrying about it and that I was the right age, right gender and lived in the right region and had some concerning symptoms as well so he sent me in for an MRI. The MRI was inconclusive but it wasn’t an MS protocol MRI and it was only of my brain. So, he sent me to a neurologist for a more thorough work-up.
The neurologist performed a neurological exam, took blood samples and sent me in for a 3-hour MS protocol MRI of my brain, brain stem and lower back to see if she could determine another cause for my symptoms because SHE didn’t think I had MS either. In the end, the MRI series showed lesions not only in my brain but in my brain stem and in my lower thoracic area. The lesions explain all of my symptoms. So, she was forced to finally admit that she thought I really DID have MS but sent me to an MS specialist for a second opinion and that’s when I got my final diagnosis. Even the MRI I had back in 2005 was looked at and lesions were found.
My final diagnosis was a relief. I KNEW something was wrong and I wasn’t crazy. My husband had made me feel like there was something really wrong with me mentally and he kept begging me to change and get back to the woman I used to be. So my diagnosis was a huge blow to him but it was a relief to me. It took a lot of the stress I’d been carrying off my shoulders and the guilt I’d been experiencing about the fatigue I felt and how lazy I felt. And it put us on this road of discovery – discovering what MS is, how it works, what can be done, what can’t be done, etc.
I got on a DMT right away after diagnosis and after a year and a half, my symptoms were continuing to get worse so I switched therapies and am now in a period of remission.
But I am thankful every day for the MS diagnosis. I wouldn’t choose to have MS, but since I have it, I’m making the best of it. And I finally know what’s wrong with me. There’s an explanation and the relief that comes with that knowledge is freeing. MS can feel confining sometimes, I’ll admit. But I’m free from the guilt and stress I felt for so long because many of my symptoms were such that they appeared easily fixable. For instance, if I would just focus and pay a little more attention, I wouldn’t make so many mistakes and if I would just suck it up and push myself a little harder, I would be able to get through a day, after a night short on sleep, without yawning and mentally shutting down.
Now, even though he doesn’t like it, my husband understands my limitations better and makes allowances for them – most of the time. In a lot of ways, my MS diagnosis freed me to be me. Maybe not the same “me” that I used to be, but I can be myself now without constantly putting pressure on myself to make changes that are impossible for me to make because of MS.
And as for my previous brush with MS that was blown off by the neurologist, I’m not bitter. I was a LOT more afraid of MS back then and we didn’t have children. I wanted children and if I’d been diagnosed back then, my husband would never have agreed to bring children into this world knowing I had a disease like MS. Don’t judge him too harshly for that – he’s an airline pilot. If something were to happen to me such that I couldn’t care for the kids anymore, he would have to quit his job and find something else to do that would allow him to be home every day – that would pay less because he isn’t trained to do anything else so has no experience with any other industry, and it would mean we would have to put the kids in daycare which eats more of your income, etc. It would be a huge financial hit if he had to leave and take a different type of job and he knew it back then. But I adore our children – they keep me going and I am thankful daily that I didn’t get diagnosed sooner because I wouldn’t have my beautiful babies to get me up in the mornings.
So, to me, MS is a blessing in disguise – a relief and something to be thankful for. Go ahead and say it – I’m crazy and I know it. But I’m happy so it’s not all bad to be a little crazy.