My MS/HSCT Journey

6:30 am      Basically what I wake up to every day. It seems to happen no matter what I do. I try to move slowly, try to slowly move my leg and arm, and it doesn't matter. The spasms hit hard and fast. I guess it's one way to wake up.      You can't see in this video (cause I'm in my underwear) but my right leg is extended out and also in a spasm. My stomach and cheek are also in spasm. My arm, wrist, and hand are the most intense.  10:06 am      So far today I am feeling good. My period is over which helps and I am getting back on my diet. Being in the hospital from my flare threw me off track big time and I haven't been as focused on my diet as I should be. I have finally started losing weight again which is great. When I finally finished the steroids, I was at 170. I last weighed in at 166.2 and every day that I have weighed myself I have stayed at 165 - 166. 3:22 pm      Yay, skipped my baclofen this morning and I have...

     So last night I had a spasm. I am so sick of these. My husband says it seems like I am having a seizure except I'm conscious through it.      The spasm I had last night affected a new area, my tongue. Towards the end of the spasm my cheek and mouth muscles tightened and my tongue started to curl. It didn't feel like I would swallow it but I couldn't move it. I was trying to tell my husband that my tongue was now being affected but it was difficult because I was consumed with the intense contractions of all my muscles. When the spasms stopped, I'm exhausted and panting. I fell asleep and was woken a few hours later with another spasm.      When I woke up this morning, I tried to slowly get out of bed so I could get up to go to the bathroom. As soon as I stood I was taken by another spasm. My husband grabbed my arm to try to keep it straight so I wouldn't stain my arm since my arm sometimes twists and bends uncontrollably. Thankfully he ...

     So I decided to do this blog because it's an excellent way to record my symptoms, thoughts, and my medical information/ experiences during this crazy Multiple Sclerosis journey. There might be times I have difficulty typing, writing, or talking but this blog gives me the option of all the above plus video which is amazing. By documenting everything, it makes it easier to inform my doctors as well as remind me of the things I have experienced. It will also provide an outlet, a way to vent and explain the ups and downs of living life with this disease.      I made this blog for me - but I understand that this blog is on the internet and anyone can view it. I hope that if someone else can benefit from my story, maybe just by knowing they aren't alone or learning more about this disease that maybe I can be a part of bringing awareness to Multiple Sclerosis.

12:15 AM      I just had a spasm. No one's awake. They seem to be getting worse and worse for my face. This one felt like if I opened my mouth it would pull my jaw apart or dislocate it and if I shut my mouth ,I had a difficult time breathing because my lips were shut tight together. I'm starting to get scared of these spasms. They really suck and I don't even know if the medication is working. It's really wearing me down and the spasms pick the perfect time to attack. It's always when I'm least expecting it and it creeps up on me taking me by surprise.      I now understand why my shoulders are so sore. It's practically ripping my arm out of the socket. I'm so tired of this. I'm tired of all of this. When will it stop.

     Woke up this morning and immediately has a spasm. I'm not quite sure if it was because I got too warm or something else. I took my Tecfidera (MS meds) and my baclofen (for muscle spasms) as soon as I could so I wouldn't get any more spasms. I started my period yesterday. Maybe that's why I have been getting the spasms so bad.       The problem with This morning's spasm was when the spasm lifted it left my face screwy for a while.  I had to massage my face in order for the muscles to loosen up. these spasms are driving me crazy. I wish they would stop. It's both physically and mentally exhausting. On a positive note, once I had my coffee and started to work on my walking I noticed I could walk a bit faster and had a lot more energy. My day has been as follows Wake up  Get coffee and relax with a little television Do my yoga stretches Try to get 1000 steps before 10 am Try to get 1000 steps before 12 pm Make lunch Try to get 1000 steps bef...

     Today I went into to have an ultrasound of my liver. The doctor thinks I have fatty liver but wants to make sure. I have made some huge lifestyle changes. I quit smoking on November 16th, 2021. I quit alcohol twice, once in January - end of March and then again in May - current. I have quit all soda and sugary drinks in December 2020. I stopped eating prepared foods such as TV dinners and stuff like hot pockets. I have been focusing my energy on learning more about nutrition, food, and eating healthy. So by adapting healthier habits I am hoping I will loose weight soon and that will help alleviate my symptoms and fight my disease. Oh and fatty liver, which I'm sure I have.      Since I don't have much control over this disease, by changing my diet and lifestyle it's my way of giving MS the middle finger. Focus on the things you can control, what you can fix. The spasticity has been pretty hard. It's bad enough that my body crumples and I cannot ...

     Today I am having a hard day. I was woken three times last night with muscle spasms. They traveled down my leg, throughout the right side of my stomach, up to my arm, in my shoulder, neck, and my face all on my right side. One woke me up and after that one, I quit trying to sleep. I thought this was spasticity but now I'm not so sure. Can spasticity affect such a large area at once like that?      One spasm I had today made me cry and when I did I had a hard time breathing until the attack was over. Horrible noises sounded from my own throat and that was very scary. Thankfully the spasms have only lasted 40-50 seconds but those are 40-50 seconds of hell.      The next one hit me on the toilet, midstream, and I was holding on to the shower door so I wouldn't fall with my one good arm. My flow stopped completely and I could feel all the muscles in my core tightening. It was awful. Thankfully I made it through but my stomach felt raw for an...

     Today I started my new MS medication, Tecfidera. It's supposed to stop new lesions and prevent relapses.      So far I have experienced flushing. I called the pharmacy to make sure that was what it was and not an allergic reaction. I never experienced flushing like this. It feels like a burning sensation, like I am being burned by the sun. My skin feels hot and I am turning super red on my upper arms, shoulders, chest, neck, face, and a little above my knees. It's annoying but tolerable.      I heard it helps to take a baby aspirin at the same time as the medication. A cold wash cloth around the area affected helps. Eating before taking the meds or waiting 2 hours after.      Well, we will see if it works. I am praying so hard that it does and that I have good luck with it.

I am so depressed. I don't feel like myself. I feel like I am looking through glass, watching myself be tortured. This isn't me. Am I even alive?

 So I took a shower and noticed that I was having trouble holding the towel. My fingers were having a hard time holding while also sliding down towards the end of the towel. My hand feels clumsy and uncoordinated.  After I got dressed, I tried to an excersize where we you rotate on wrist around the other and there is definitely something up with my left arm. I really hope this isn't another relapse. I have been depending so much on my left hand to compensate when I can't use my right and my right hand isn't better yet. If this happens to my whole left side than it's going to really delay the healing. Grrr, I start to get up and MS knocks me back down. This is so irritating. I guess I shouldn't get ahead of myself until I talk to my doctor. I see him on Thursday. That's just a few days away. Meanwhile, if this gets any worse I am going to the hospital much sooner than last time so I can recover faster and the damage won't be as bad.

   I got my 2nd dose of the vaccine today. I have not had any side effects other than 4 hours later feeling incredibly tired. I am fine. I took a nap.        I don't think the vaccine in anyway caused my relapse because I was having symptoms of a relapse prior to getting the first dose.       I was supposed to get my 2nd dose on July 30th but decided to wait a little bit due to the steroids I was on in the hospital lowering my immune system. I wanted to give it time to perk back up.