Part 2 The Diagnosis

(Read Part 1 under New Year New Me… )

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The MS hug was a painful experience. The entire onset of this symptom and the parathesia, numbness and tingling, accelerated for 11 days until it finally broke. During those last 5 days I was starting to get frustrated and depressed. My life flashed before my eyes and I looked at my children and cried. I could see the finality in my own life and felt guilt and paranoia I was in some way repeating my mothers life. My mother lived her life knowing that one day she would become completely blind and deaf. She has Ushers Syndrome, a progressive disease combination of retinitis pigmentosa (damage to the back wall of the eye or retina) and hearing loss. It made her extremely depressed.

Everyday I called some new practice and saw a new doctor. I was asking anyone and everyone to help with these symptoms. I had scheduled a neurologist appointment but the earliest one I found was 2 weeks away. Acupuncture was the only thing that made a difference. It wasn’t felt right away, but the effects lasted up to three days. The numbness and tingling was still there, but it eased my muscles which reduced the tension and stiffness in my legs, feet, and hands. I sought out another doctor during this time since I was scared to take the Lyrica after reading the reviews. He was an urgent care doctor and he was so very nice. He gave me a prescription for prednisone and urged me to get a sooner neurologist appointment. He said I was young and healthy and I should be seen as soon as possible. He offered to call doctors for me if I couldn’t get in. This inspired me to get back on the phone. I ended up getting an appointment that week. A couple of days later this doctor actually called me to check on me and make sure I got an appointment. I can’t thank him enough for his kindness and thoughtfulness. I also made an appointment with a holistic doctor. I figured since the acupuncture was working it made sense. I also feared that if what I had was a long term medication situation, I should reassess my health to counteract any side effects from the pharmaceuticals I may need.

When I finally saw my neurologist she sent me for and MRI of my neck and brain. She said the hospital did do the right thing in looking at my spine but the work up was incomplete. She didn’t push the fact that MS was probable and suggested it could have also been from a fall on the ice I had earlier that month. She did say that MS was very likely due to my age and symptoms. That same day I saw another neurologist in the afternoon. She was much more abrupt and impersonal, and also a part of the hospital group that I had such a bad experience with. She asked me two questions: Why did you leave the hospital? and Are you on drugs? She also suggested the two MRIs as well as a spinal tap. She flat out told me I had MS and dismissed my ice fall. Isn’t MS really hard to diagnose? I thought. My symptoms were still receding and I was feeling more positive. I didn’t go back to the second doctor and I started telling myself it was probably just a concussion and everything would go back to normal soon enough.

The following week I got my MRIs. This experience was much nicer and a little shorter as I went to a diagnostic imaging center as opposed to the hospital. The next day my neurologist called. “Come in tomorrow” she said. What?! “There’s an abnormality on you neck, I want to see you tomorrow.” What do you mean abnormality, like MS?. “Yes” she said. I was so deflated. The next day I went in and saw it with my own eyes. It was real and it was clear as day. A huge white blob in the spinal column of my neck known as a lesion which is demylination of the nerves. The myelin, or material that covers and protects the nerves is what is attacking itself and why MS is an autoimmune disorder. This active spot in my neck was causing my crazy symptoms. My Dr. showed me more evidence of spots in my brain, older lesions that happened in the past but may not have produced any symptoms because they were in parts of the brain that are one of many areas that produce similar functions. It was a lot to take in. I was in shock and running on adrenaline.

Part of it was relieving to have a definitive answer and a means to address it. The other part of me feared missing out on parts of my life or my children’s lives or being less able to participate. I did my best to stay positive. Coincidentally I started this blog in October, and it has been a great distraction to focus on. If I wasn’t linking selfies of my outfits I would be googling my sanity away. Even now still 17 days after it started to decrease, my fingers still fumble with the keys. The front of my stomach is still numb and tingly. My fingers are still stiff, my hair still feels like straw, my beautiful daughters hair feels like straw, and warm water bothers my hands. It a bizarre thing to have your senses affected. Especially if you are overall healthy on the outside. I imagine I maybe understand more of my mothers frustrations with her daily life. Its not exactly chronic pain but it messes with your head. Its a constant reminder that something is wrong. It puts you on edge and reminds you of your own mortal vulnerability. I guess this is part of getting older too. Its no fun. I have a very strong sense of self. I believe I am powerful and resilient so this feels like a big blow to my strength and determination to survive. Nonetheless it is part of life. I still feel adaptable and confident I will handle this obstacle and many of life’s obstacles as they come. I have no other choice.

This past week I did a home steroid infusion to help alleviate the inflammation on my neck. Next week I will be going back to my neurologist to determine my long term medication, most likely Techfidera. I also made an appointment with a doctor at an MS Center to cover my bases. As I slowly try to readjust myself to normal life I don’t feel quite normal. I feel more worn out, tired, distracted, and impatient. I feel happy and grateful with a sense of sadness. I know it will get easier but right now this is all still new. I am just three days short of a month since my symptoms first kicked in. I have found some positive voices online, other ms bloggers who share information and inspiration. I continue to seek out those voices and I hope I may have contributed.

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3 comments

  1. As I read your diagnosis post, I do know and remember just how terrifying it can be! I was diagnosed almost 18 years ago and I was only 19 years old! It was a complete and total shock to me!! At that time I only knew one person with MS and that was my biological father’s wife, as you can probably tell we are NOT close at all. However, I knew she was disabled so I immediately thought my life was over. But, I obviously overreacted and was very wrong. I of course have learned a normal life can still be lived and this diagnosis did not mean I would never walk again! I think Tecfidera is a good choice with it being oral. I tried the injections and infusions at first because oral was not available.I am not on Gileyna. I did try switching to Tecfidera back on October because I was scared I had been on Gilenya too long, but unfortunately my MS was a little too aggressive and Tecfidera was not strong enough, at least that is what my doctor said. I do not know if I agree and the reason I had a flare up was due to an incredible amount of stress, not the change in medication.
    Anyways, I am glad you have shared your story and I really want you to know that if you ever have any questions or need anything, please contact me anytime. If you would like you can just respond with comments or you can email me directly, alyssabowman81@gmail.com. I understand what you are going through and really wish I had a network like this when I was first diagnosed. Sending you lots of love and strength!!!

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