Living the not so good life

Since I was little I've always given doctors a run for their money. I'm not an easy patient, I don't mean that I don't listen or comply with their advice but I have rarely been textbook for any illness. Of course when it comes to MS my symptoms aren't always documented. At the same time, just because I have MS doesn't mean that every time I have an issue that it's always related to MS (I have seen doctors who want to blame anything and everything on MS).

Over the last 4 years I've learned more about MS and how it presents in me. Plus, I have learned what can trigger an MS attack like heat, an infection, and different things like that. But, when there's MS symptoms from heat or infections it's not usually a relapse. 

January 1 when my right leg went completely numb I assumed it was MS related. The following Monday the neurologist fit me in with the PA. I was in the office for 2 hours, the first hour the PA did a thorough neurological exam (includes reflexes, the feeling in the arms and legs, walking, smiling, checking eyes, and so much more) and she agreed I'd probably need to go through a round of high dose steroids. Then the PA then went to talk to the neurologist who also did a very thorough exam. 

I expected to set up time to do the steroids and be on my way, but that's not what happened. My neurologist said she didn't think my leg was related to MS and was probably something to do with my peroneal nerve (which is a main nerve in the lower back). She order an MRI of my lumbar spine on Wednesday. It definitely wasn't what I wanted to hear. I wanted to know that I could do steroids and be "normal" again. 

Unfortunately the MRI results weren't quite conclusive. If the MRI had shown a herniate disk or bulging disk then surgery could be done to remove the disk from the nerve. I don't want to have surgery, especially back surgery but I (think) want answers. I'm not sure if I really want the answers, over the years I've learned to be very careful when searching for answers. Over the past couple of years I have searched for answers and they are never good.

Last Friday I had an appointment with the PA with pain management. When she saw that I was in a wheelchair and not walking (since I couldn't feel my foot and had to use crutches to walk my neurologist was worried I'd hurt my foot worse. So I use the crutches around the house) she asked what was going on. Right after than she saw the patient before me, it seemed like an unusual amount of time waiting. But, when she came in the room she told us she was on the phone with the neurologist to see if the pain doctor could do anything. (Yes, I have a team of doctors who work together! It's great for times like this because the more doctors brainstorming the better.)

The PA at the pain doctor told me they wanted to do steroid injections in my lower back to hopefully bring down swelling and possibly help my foot. Also, they discussed steroids which the PA was going to prescribe, but for MS doctors usually do 3 days of high dose steroids (which are only available through IV or liquid oral). Friday afternoon the infusion center called to set up an appointment for my first dose of steroids. I made an appointment for Monday, but then I got "lucky" because the center called back saying a home health agencies said they'd take me on.

The little ball is there medicine. It's so crazy because it automatically releases into the vein  over 30 minutes. 

Friday night the infusion center sent a bag of everything the nurse would need to start the IV, saline, the actual medicine, and so much other random things that I don't think were even touched. The home health nurse came Saturday morning to start the IV, which I'm a hard stick and always have been and they only sent 3 needles. Luckily she got the IV started with the second stick which wasn't bad. Sunday morning I woke up feeling excited because the steroids helped with the numbness in my calf. I was hopeful Monday my foot would be better but I wasn't that lucky. 

All the "fun" items the infusion center sent me.

The issue with the high dose steroids is after I am on them I get sick. Although, each time my dad was sick when I got the steroids, but I didn't get the same illness. Tuesday I was supposed to go to the pain doctor for a steroid shot, but I got bronchitis so I had to reschedule. Monday I'll be going to get a steroid epidural to help my back. Then, Tuesday I'll have a nerve conduction test which may be able to tell if it's the nerve root or not. 

At the end of January I have an appointment for a foot brace. I have a very busy life considering I'm not working right now. It's very hard though to look at my calendar and instead of all these social events mine is covered in various appointments I have, when I'll need to refill the different medicines I take. It gets tiring, old, and not something you'd ever really want to deal with. 

I want to restart 2015!

At the beginning of every new year I always pray for better health. When I was little it was in reference to ear infections, then to endometriosis, and since being diagnosed with MS that's my biggest wish for every new year.

Last Thanksgiving and Christmas was horrible! What was supposed to help my pain ended up causing more pain and I got a 5 day hospital stay. Then, right before Christmas I finally started feeling better. But, due to all the trauma my body went through while I was in the hospital my immune system decided it needed to go into over drive.

I started 2014 in a relapse that took forever to go away. It was the longest relapse I've had to date and I did 3 days of high dose steroids and waited the 2 weeks for it to take full effect. After the two weeks I had gained some mobility back but still wasn't able to move my arm at all.

Throughout the end of 2014, most of my major MS symptoms came with an infection of some sort. It makes sense, my body starts fighting off a sinus infection and then begins attacking itself. It's amazing how the body works like that. From June until November there were at least 2 or 3 times when I started having major symptoms but ended up on antibiotics and was in the clear.

Well, late New Year's Day my right leg went numb. It wasn't the usual numb, this is like I can't feel my foot/leg at all! I can move my leg but I cannot wiggle my toes. I tried my cane which didn't help in the least bit and that's when I started freaking out. My mom and I were quickly running out of ideas. Luckily I had crutches from a knee surgery when I was about 13 so my mom was like just try. I gave in and decided to try. It did help, thank God! I don't know what I would have done if I'd have been stuck in the bed.

The bad news was that I knew that my neurologist couldn't do anything because of the 24 hour rule (you must experience a symptom for at least 24 hours). But, Friday morning I woke up and it was still numb but started coughing. I had been coughing for a few days, but it wasn't a serious cough like some. I was still paranoid because I didn't know what options I had. Until, around 10:15 ish I started coughing up mucus.

I was almost relieved for a little while because I was thinking if I had an infection then it may be what caused my leg to go numb. After coughing up mucus for awhile, I called another doctor to see if they could call in antibiotics for my cough. I was very excited that it would help my leg. But, while the cough is getting better my leg is still not much different. It's so frustrating. I hate having to deal with all the aspects of MS. It's such a confusing disease and there's not always an answer like you feel there should be.

Now, I am wishing the clock would go by faster so I can call and hopefully get on steroids tomorrow I'm also worried about them! The last time I took steroids was Christmas Day 2014 and I did them orally. There were absolutely disgusting! But, the other choice would be going for 3 days of infusions. I am a hard stick, but I think this time I may just go with the IV and pray for the best. I just want my leg to feel normal! The start of 2015 was only good for about 8 hours and it was all down hill from then. I hope tomorrow they are able to start steroids because I have a busy couple of weeks and I can't be stuck at home.

Of course it's my right leg, any time I need to drive places it's always my right leg. But, no worries I will stay home with my Snuggles before I would ever venture going out with a foot that doesn't work! I get paranoid driving if my leg is only slightly numb. I just hope that after this episode I'll be able to re-start the new year!  

On days like the past few days, when I'm having a really tough time with MS I just give Snuggles

some love! He doesn't care if I'm stuck in bed and can't walk for. Actually, right now I can't hold him 

while I'm walking. I just do what I can. He is okay with us just watching TV and trying to get my

mind off the fact that I still cannot feel my leg nor wiggle my toes. 

Medicine and Cost of MS

Multiple Sclerosis is the 2nd most expensive chronic illness second to congestive heart failure. I've always had good taste, apparently my body decided if I was going to an autoimmune disease it has to be one of the most expensive.

The first medicine I took for MS was Copaxone, a daily shot, costs $5,500 - $6,000. The day I got the call from the insurance company, and so many other people I don't really know where this guy was calling from but he told me my copay would be 20% every month! That would have been $1,100 a month, but thankfully when the speciality pharmacy called I was told that my copay would be $50 for a 3 month supply. Plus, the nurse at my neurologist asked how much I pay because they have a copay program so that no one should pay more than $35 a month.

The medicine I take for MS now, Tecfidera, costs between $5,100-$5,400. They also have a copay where they also have a copay that's $10 a month. My insurance company now works toward prescription medicines so once I met my deductible I get all my medicines for free. It really is awesome because some of the medicines I take are expensive so it helps on so many levels.

Plus, long term people with MS may have to retire early due to disabilities. Therefore, it can be financially hard, especially if you don't have a lot of money saved to help with the costs of going to doctors, hospital stays, medicine, and so much.

For doctors to monitor MS patients have to at least have one MRI every year. In 2013 I had at least 4 MRIs and in 2014 I had two MRIs. The MRIs are not cheap, the first one is usually $750 and then the price drops for the second and additional to maybe $400 ish. When I was first diagnosed with MS I was very overwhelmed by all the financial costs.

In a lifetime, MS costs patients roughly $2.2 million. That's insane and it's hard to hear that when you're only 22 years old really hit me hard. I got really upset telling my mom and dad that I'd have to work just to be able to continue to see all my doctors (I have about 9 doctors).

Due to my MS symptoms and other unrelated issues I have to take 19 prescription medicines. I hate it, but I know I have to take them so that my symptoms don't get worse. Having a stable MRI (meaning no new lesions) is huge and every time you go in the tunnel that's what I always pray for!

There are times when I don't take medicine, if I don't take sleep medicine I cannot go to sleep at all. I've stayed up for over at least 60 hours before. I hate not being able to sleep! The lack of sleep makes me delirious, my heart starts racing, my face gets red, and usually my pain goes through the roof. I try to lie down and take slow deep breaths and any and every trick I know to help me sleep!

The truth behind MS

Before I was diagnosed with MS, I only knew of a few people with MS. The people I knew were diagnosed before there were any treatments for MS. Since there weren't any treatments the disease progressed faster than for people like me who started treatment right away.

Multiple sclerosis effects everyone differently so no two people will have the same symptoms. When I was diagnosed with MS I was upset because I assumed I'd be in a wheelchair. But, over time I realized that not everyone with MS will need a wheelchair. Plus, I also decided if I have to use a wheelchair I will wear all my cute heels that I haven't been able to wear often ;) 

Woman with MS can have babies and have a completely normal pregnancy. The only issue a mother may have is that once having a baby some women experience a relapse. Plus, there isn't any research that MS is past down from mother to child. There is a small percent chance that if you are related to someone with MS that you can get MS but it isn't that high of a possibility. 

Everyday I wish I could have my old life back. When I first went to my new neurologist (a doctor who works solely with MS patients) told me that I was "lucky" because I was young (even though I thought otherwise) and that I was female. Women are more likely than men to develop MS, but women tend to do better than men with MS. Plus, just because I have MS doesn't mean I can't live a full and great life. 

I'm not sure why, but people with MS tend to have low levels of vitamin D. When I first started seeing doctors they did blood work and my vitamin D levels were really low. I was given a prescription to take 50,000 units once a week for at least a month. Now I get 5,000 units of vitamin D daily. 

There are four different types of MS: relapsing-remitting (which is the most common form and the type of MS I have), primary-progressive, secondary-progressive, and progressive-relasping. To monitor the symptoms and lesions of the brain yearly or sometimes more MRIs. 

There are several disease modifying drugs on the market today. Plus, the best news of all is there are several pills. When I was first diagnosed I was given a daily injection Copaxone. Copaxone was very acidic so when I first started taking it it would burn so bad. I still have whelps from where I did the shots were done. Since I wouldn't let anyone help me with my shots I was limited to where I could do them because when I was first diagnosed with MS I was finishing my last semester at LSU so I had to do them myself. Then, once I moved home I was so used to doing them myself so I wouldn't let anyone help me. Luckily after 3 years I was able to switch to Tecfidera one of the pills and I love it some much!!!

Ablation Procedures

In April 2014 I had a facet injections in my upper back. It helped more than I could have expect, but it was supposed to last for 3 months and for me it only lasted for about a month or a little more. Since the facet injections so they scheduled me to have the ablation (they burn the nerves near the vertebra). 

But, BCBS denied the ablation because even though it's FDA approved they consider it "experimental." It was so hard because I've been in chronic pain for years and every other procedures I tried didn't last too long. I have been getting Botox to relax the muscles but again it was supposed to last 3 months and usually it would last for about 2 months or so. 

It is very hard being so young and in pain for so long. There comes a point where it's so bad being so young and being in pain for so long. There are times when I worry that I'll never be pain free. I also worry about what will happen after I get when I get older I hope I'm able to get relief from the pain. I'm not even out of my 30s and I've been in pain for so long I don't know the last time I was pain free, even low pain days. 

Finally I talked to the PA about paying for the procedure with cash. They do the procedures in two parts they do one side and then 2-3 weeks later they do the other side. The first one was on December 8 and the second was on December 29. The first procedure went over really well but the second one I done I was in more pain afterward. Now I have to see how long it'll last because the doctor told me it could be anywhere from 6 months to 2 years. I doubt it'll last 2 years, I can never get that lucky. That being said, I tend to have an issue with procedures they usually last on the shorter side. 

I am bitter because if I hadn't been misdiagnosed I probably wouldn't have to deal with chronic pain. I have gone to some crazy doctors who told me I shouldn't be in pain because MS isn't a pain disease. That's completely untrue! The National MS Society did a study and it showed that many people living with MS do experience pain. It amazes me because doctors say these things and don't have real evidence to back it up. 

Pretty in Pink

I usually write about my struggles with MS and how it's affected and changed my life over the past four years. While multiple sclerosis is a major health issue I deal with from day to day, but I'm "lucky" in a very unlucky way.

October is one of my favorite times of the year, but not because of halloween like most people. October is breast cancer awareness month and as someone who has a slight obsession with pink, I get excited about all the products that come in pink. Over the years I've collected quite a lot of pink items during October like pink knives set, a pink coffee pot, pink/black Northface jacket, and so much more!

Until four years ago, I supported breast cancer awareness because of all things pink. But, after a CT-scan of my abdomen showed a shadow it changed. The radiologist really felt that the shadow needed to be checked out so I underwent a sonogram of my right breast looking for any masses. Prior to having the ultrasound so many people told me it was nothing and not to worry. 

I really wasn't worried about the ultrasound, I was actually glad I didn't have to have a mammogram. The technician did the ultrasound and left the room for about 10-15 minutes. I was feeling like I was in the clear because she didn't measure anything. But, then she came back and went to a specific area, where she started measuring. 

I can't read ultrasounds, but I had enough knowledge to know there wasn't anything she should be measuring in my breast. At that point my heart sank because I knew they saw something on the ultrasound and the shadow they saw on the CT scan was that mass.

Again, she left the room and said she'd be back in a few minutes. This time it seemed she was out of the room for a very long time. Then, all the sudden several people came in the room. The technician, nurses, and the radiologist all came in the room. 

The radiologist proceed to tell me that she was very worried about the mass because of it's shape. She also said it would need to be biopsied but she didn't feel comfortable doing it because it was so deep. There was only one other radiologist that could do the biopsy and he was only at the hospital on Tuesdays and Thursdays. 

Oddly enough, I was overly calm and numb over the situation. I scheduled the biopsy and prayed a lot. The day of the biopsy I was very nervous and anxious. 

The nurse took me into the room and talked me through what would happen. I was told they would give me lidocaine shots and they would use the ultrasound to guide the biopsy. The radiologist would take between 6-8 samples of the tissue mass.

I'm usually a huge fan of lidocaine, but when injected in the breast it was extremely painful. Then, I could feel the needle going in, but I didn't say anything because I wasn't sure what was worse -- more lidocaine or just praying for it to me over. Since it was so deep, the radiologist had a difficult time getting the needle to the area. After taking 2 samples he decided that was all he was going to get because the risks were high for a punctured lung or other complication. 

The worst part of the ordeal was waiting for the results. While I waited I prayed a lot and asked my guardian angels to watch over me. Then, I finally got the results and it wasn't cancer! That was the best news I could have ever asked to hear. 

I don't think I could have handled cancer and multiple sclerosis. It took me awhile to come to terms with the MS diagnosis, I appeared to be okay but when I was alone I was still struggling with that. I have dealt with several health issues throughout my life, but I really struggled with MS the most. 

My "new" normal....

If there's one thing I've learned about MS over the years it's that multiple sclerosis is unpredictable! I never know if I'll wake up with half my body numb or maybe today is the day the symptoms will get better. Despite the diagnosis of relapsing remitting MS, I've found that after each relapse my body doesn't bounce back to exactly where it was before the relapse. 

The worst relapse I had was probably the one that came on Christmas day 2013 after being in the hospital with a spinal hematoma for a week after Thanksgiving. That relapse lasted two months even after I did the three day dose of high steroids and physical therapy. To make matters worse, my right arm was completely paralyzed I could only move my hand which being right handed dominated made it even harder. 

Unfortunately, since then I have had several mornings when I woke up to find my arm paralyzed. It has happened 4-5 times since I got full use of my arm back in mid-February. The paralysis also struck  my left arm but since it didn't lasts for 24 hours some of the time there wasn't much I could do.  

Before something that be considered a relapse the symptom has to be constant for 24 hours. The first 24 hours are always full of anxiety and makes me nervous. Since mid-February every time I had an issue the first thing I did was check the clock. 

It became unusual because I started getting MS symptoms along with coughing up mucus. I was fairly certain that the mucus was infected, but I wasn't having a runny nose nor was it bronchitis. The first two times right when I was going to make an appointment with my ENT and the cough along with the mucus was gone. The first time not only was my arm paralyzed, but there was shooting pain from my neck down my arm if I moved a certain way. 

I had gone for blood work (normal labs I already had scheduled to check my CBC and iron levels) the day the pain got worse and my hematologist was concerned that my white blood cell count was high. After telling the hematologist about the random coughing events, she ordered the blood work to be redone and an x-ray to check my lungs but the other tests results (5 days after the first blood work). 

My arm slowly got better, but it was slow progress. I had talked to my doctor about high dose steroids, which is pretty much the only "treatment" for MS, but I wasn't fired up about taking them again. Steroids can be great, but there are also many dangers you have to be aware of when making a decision. As long as I was getting better I was okay without steroids I was okay with it.

A month or so passed and then MS hit me hard! I had gotten up in the middle of the night and realized my leg was weak and I couldn't walk without assistance. From that moment I was in shear panic mode! I realized I couldn't walk to get a glass of water (which was my attempt at  getting up), luckily I found water close to my bed so I didn't have to wake anyone up. The next morning (a Sunday thank goodness!) I realized that I hadn't gotten strength in my leg yet so I called our house phone from my cell. 

I was terrified, filled with anxiety, and calmly asking my mom to come help me. At first she didn't understand why I needed help,  so as calmly as I could I explained to her that my leg was weak. Luckily we had crutches from a knee surgery I had years ago, but I still made a request that took every part of me to ask: I asked my mom if should could go to CVS and get a cane. Of course she said she would, it still killed me because I'm 26 years old and shouldn't need a cane. But, we both knew it would make it easier to get around. 

The week progressed and I developed more MS symptoms. My left arm was paralyzed, my left leg was weak, the right leg was numb and the cough was back. This time the cough and infected mucus was back fast. I also called my neurologist who offered IV steroids, but I have horrible veins. The week this happened was my last iron infusion, which took more than one IV to get it in. 

My neurologist was also out of town, so I talked to the nurse who did say I could have steroids if it was something I wanted to try. I pushed it back, but finally went to the ENT about my cough. It turns out I had an upper respitory infection, but it hadn't turned into bronchitis. I was given antibiotics for two weeks, once I told the nurse that she said it would be a good to take the antibiotics for at least the weekend and then reevaluate if I still needed steroids.

I am so lucky!!! I took the five doses of the antibiotics and I was already starting to feel better. While I was still experiencing symptoms they were slowly going away. So now, my I had to worry about the 24 hr rule AND that a small infection can cause an array of MS symptoms. 

The more I "know" about this disease the more I don't get how it all works. I have had two brain MRIs this year (in January and July), but neither one showed an active lesion in the area that one "should" have been with the issues I've been having with my arm(s). The MRI I have in January was during my relapse with my arm, but there was not a lesion in the area. However, at that appointment I remember the doctor telling me that I was obviously in a relapse because I couldn't move my arm. Right now it just adds to my confusion and I have a "new" normal that includes my arm issues. 

No matter what happens this little guy will always have my back. He doesn't care if I have to use a cane, a wheel chair, etc. Snuggles is always with me and he's what keeps me going when I'm having bad days.