Tag: ms

The Wizard Report

~ msgracefulnot ~ 6 Comments

As I mentioned in my really long post, Off to see another wizard, it was a little bit of a stressful experience. In hindsight though, everything that happened that day until I met her, can be chalked up to the fact that it was new, and I wasn’t prepared. I feel that if I see her again, it will go much smoother.

As a person, and as a doctor, I liked her a lot!. She spent over an hour with me talking to and listening to me. Yes listening! For that reason right there I should claim her as my doctor. I will explain the reasons I am hesitant in a moment, but first I would like to tell you more about the positives.

Did I mention she listened?!?!?!? I never felt rushed, or like I was an idiot as some doctors with a god complex make you feel. When I was done giving her my history, she went through each of my 4 MRI’s with me, pointing out which lesion was most likely responsible for each symptom. Would you believe no one has ever done this with me before? I have been told that I uncharacteristically have more lesions in my spine than I do my brain, but that was it.

Random Fact : Most people with Multiple sclerosis might have ONE lesion in their spine for every 3-4 in their brain. I have 3-4 in my spine to every one in my brain.

The doctor compared each MRI with the previous one that I had, pointing out that while I had no NEW lesions, but several of the older ones had gotten larger. I wasn’t surprised by this information I also wasn’t surprised by the new diagnosis or “promotion” to Secondary Progressive Multiple Sclerosis, instead of Relapsing Remitting MS.

What Is Secondary Progressive Multiple Sclerosis?

Here is the link from the National Multiple Sclerosis Society: https://www.nationalmssociety.org/What-is-MS/Types-of-MS/Secondary-progressive-MS

IMO, it means I’ve had MS a long time. The damage that has been is done, it’s not going to get any better. I may or may not experience progression, but if they change my diagnosis in my chart to SPMS instead of RRMS, there are less treatment options available. Even though I have a limited number of options available as it is, why shoot myself in the foot? So mental note made, but let’s keep it out of the chart ok?

Another random fact: When I was diagnosed with MS, there were only 3 disease modifying drugs available, and they were all relatively new. Today there are over 20 that have been approved for the treatment of MS.

The next thing we discussed was how I wanted to proceed going forward. Did I want to stay on the same treatment? I wrote about having to change drugs in the post below, but I don’t think I mentioned the fact that I did change to Ocrevus in September of 2022.

Decisions, decisions, decisions

I told her that I made myself (and everyone else) a promise that I would give Ocrevus a try for a year, as long my symptoms didn’t suddenly worsen. I explained that my current bonehead doc would write the prescription and send it to my Primary care doctor to sign off on so that I could have the treatment locally. I would like to continue doing that if she also didn’t have privileges at the cancer center where I receive the treatment. She responded that it shouldn’t be a problem. We also briefly discussed whether or not to have my port removed, but that’s another story.

The final thing we discussed was another new diagnosis. CRPS Chronic Regional Pain Syndrome. I will write more about that in another post in the future because I still have many more questions than answers.

Overall I can’t say enough positive about this doctor. She was intelligent, compassionate, patient…..etc.

Why I’m hesitant

In my experience it is very difficult to find BOTH a doctor and their nurse, staff or medical assistant that you like. Most of the time when you call, you have to deal with the staff instead of the doctor. So far, the doctor is a 10, but her medical assistant is very unprofessional and did not appear very knowledgeable about drugs that are used in symptom management for MS when she was reviewing my list. That kind of caught me off guard.

Someone else called from her office after my appointment and said, “I’m following up after your appointment with the doctor. You do know that you will have to come up here for your infusion correct?” Um NO! I will not have someone drive me an hour and a half away to receive a 5 to 8 hour treatment and then come all the way back to pick me up! I explained that I was able to get my last two Infusions locally, and how I believed the previous staff accomplished this. I told her that I had discussed this with the new doctor and asked her to review her notes. Strike two for the staff!

It took me 3 months to get my first appointment. I truly hope that it is not that difficult in the future, but I won’t know until it’s time for my next infusion in September.

Please keep your fingers crossed for me that her staff is more competent than they appear, and that I don’t have to give up my first born for an appointment!

Walkers, Canes, and Sticks OH MY!

~ msgracefulnot ~ 10 Comments

I have temporarily had to use wheelchairs, walkers, rollators, scooters, canes, and walls many times over the years during recovery from an MS flare up, or some other self induced injury. I am trying to be grateful that after having Multiple Sclerosis for over 20 years, I am only now at the point that assistive devices seem have become a permanent rather than temporary feature of my life.

With so many assistive devices available in the world today, how do you decide which one is perfect for you? Is there such a thing as THE PERFECT ONE?

I believe the answer is NO!

While I am learning to navigate this new world of mine, I’m hoping to not only share my experiences/opinions, but also to ask you to share yours as well if you don’t mind.

For any of you that have written about this in the past, please feel free to drop your link in the comment section as well. Maybe someone will “stumble upon it” and find the answers they have been looking for?

So many options:

Power Wheelchair
Rollator/ Walker
Standard (transport) wheelchair

Although it’s not pictured here, I think MY STICK, is my go to, most used aid. Simply for it’s convenience. It’s small (in comparison to the other options) and definitely portable. I didn’t realize how much I had been using walls, people, and other objects until Covid tried to make me fear touching people and things and vice versa. Unfortunately, I forgot my stick in Colorado on my last visit and it seemed impractical to ask my daughter to send it back. The problem is I can’t find one JUST LIKE it. It’s much taller/longer and I feel even thicker than any cane I have seen. ( 4 or 5 feet tall)

I ordered the one (actually 2), pictured below, from Amazon when I got home from Colorado. While the price was right, and bonus that I have now have two for next time I lose one, it doesn’t feel as strong as the wood one. I do like that it will “break down” or collapse when I am at a doctor’s or in my car etc, but I’m afraid it will break down when I don’t want it to. We shall see…. maybe there is another story in the making?

My 2nd go to is the rollator/walker

After one of the many times, I had to “learn to walk” again, the doctor and I discussed the possibility of my using a walker.

I was concerned that leaning on a walker would not help my posture. Maybe it would improve something, but at the cost of something else? He had to write a special script for me to have a “taller than average walker” with a bench or seat on it so that I could use my arms to help keep me upright, not just to help me raise my legs. (if that makes sense) The result is that I have a BIG, like bariatric, walker that I love, BUT it is SO big, it doesn’t fit in my trunk, and to be honest it’s kind of heavy. I almost feel invincible when I am using it. I am 90% confident, I can keep myself up if I trip, and I have a ready made seat available if I need it. * Bonus, if you sit on it, someone else can push you if they had to.

Another option I have – The manual or transport wheelchair

As far as wheelchairs go, I believe this is the smallest and lightest type available. It’s actually the first assistive device I had to use because I couldn’t move either of my legs. I’ve also used it multiple times when I haven’t been able to bear weight on a lower limb from surgery etc. They do make knee scooters, and crutches, but with my lack of balance, using them would be asking for trouble. I also use mine when I have to a distance of more than 1/2 a mile to make. I hope the more I use the rollator, the stronger I become and that distance will be longer. I used to try walking behind the wheelchair (using it as a rollator/walker), but not only can it not support you leaning on the handles, without enough weight on the seat, but you have no way to reach the breaks if you trip.

I have used a wheelchair at the airport for years, which allows me to still travel as much as I do. Most airlines have changed the type of wheelchairs they have though, so it’s thrown a bit of a wrench in the works.

I can completely understand WHY they changed.

This type of chair allows them to not only push more than one passenger at a time, but allows them to store the passenger’s bag under their seat.

Once they have dropped you off at the gate though, you can not move if you have to use the restroom or something unless you have carried along another assistive device. There are no wheels on the sides of the chair for you to use.

I have carried my walker or stick with me, when I could walk, but I’ve had to keep my own wheelchair with me when I was not able to walk at all.

Bonus or alternate uses for a wheelchair:

Instead of attempting to carry something with both arms, use the wheelchair as a cart or dolly.

I used to rock/roll the twins to sleep. We’ve also used it as their “stroller” because the weight in the seat allowed me to lean a bit. If my legs got tired, I could put them on my lap, tie them, in and use my arms.

The Power Wheelchair

The last piece of equipment I own is a power wheelchair that my parents purchased second hand for me. If insurance doesn’t cover it, which they most likely won’t if your condition is temporary, and maybe even then not, these chairs are EXPENSIVE.

I most commonly use mine outside of my home because of the uneven ground. I don’t have a lift or other way to transport it, so home it stays. I actually started using it a lot more than I ever have after the last surgery. When you are using a manual chair, if you cant use your legs, you have to use both hands navigate which makes balancing laundry or trying to vacuum difficult. It proved to myself that I could do it, but using a power chair with one handed controls allowed me to use my other for whatever task I was trying to complete. Much easier! You probably shouldn’t, but when I could keep my legs straight, I could use the chairs power to push heavy things.

I want to remind you that I am not a doctor or expect at any of the things I have written about today. I’m trying to accept my knew limitations as gracefully as possible, and hope that by sharing this information, it might help. Again, if you use assistive devices or have any tips/ stories to share, please insert your link or comment in the comment section!

Thank you for reading!

Is that a walking stick? No it’s my broom?!?

~ msgracefulnot ~ 11 Comments

True story. I was walking into a hotel with my walking stick, and someone asked me, “Is that a walking stick?” TBH, my first thought was, smh, “No it’s my broom!” “What kind of question is that?” Etc etc etc., but then I realized maybe they didn’t know, and I didn’t have to be an ass. After I replied that yes it was indeed my walking stick, the woman asked if I had a few moments and/or would mind answering some questions for her. We moved to the seating area and she began telling me that her doctor suggested she start using a cane, to help prevent falling, but she wondered why some people chose a walking stick. Was it stronger? Was it Vanity? Did she need a pair of them?

I hate that I felt I had to start my response with, “Well, I’m not a doctor, (for fear of being sued or something silly like that) but I don’t feel supported enough with a cane.” “By the time I feel like I’m going to fall, I’m halfway to the ground. A walking stick not only feels stronger (more supportive), but I feel that it allows me to catch myself sooner.”

We chatted for another 10 or 15 mins and I began to walk back to my room. I’m glad I wasn’t an ass and that I stopped to talk. I do remember having to use aides for the first time and being overwhelmed with the choices. Maybe I helped? I hope I helped. As I walked away, I did chuckle to myself that maybe I am going to add some bristles around the bottom of my stick to make it look like a broom. Definite conversation starter wouldn’t you think?

Lately, I’ve been toying with the idea of starting to blog again. I’ve made it as far as logging into wordpress and saying, “hey”. My first step though was logging in and seeing my last post about losing my Best Friend. I would quickly close the webpage wondering how you come back after writing that. Maybe? You just do. Maybe you start with a hello? I’ve done that. Maybe I share what I have been doing to move on for the last several months? Shrug. I’m not really sure what the future holds, other than another post talking about sticks, canes, wheelchairs etc. I do hope to see and talk with you all soon though!

Taking inventory

~ msgracefulnot ~ 3 Comments

I’m not sure if everyone does this, or if it’s just me, but during the year before a Milestone Birthday, ( 21, 25, 30, 40, 50 etc) I do an “inventory” of where I am in life versus where I want to be.  If I died tomorrow would I have any regrets?  Do I need to say anything in particular to anyone? Are my affairs in order?  What do I want to accomplish in the next 10 years?  and so on and so on.  I also do this everytime I get another scary diagnosis.  I will be 49 in less than a month which will start the “OMG I’m gonna be 50 reflections”.  This year I get to kill two birds with one stone I guess?  lol

When I was 29, I received the “wonderful news” that I had cervical cancer.  As the doctors were talking about chemo and radiation, I asked, “why not just take it all out?.  ( do a hysterectomy)  You should have seen the shock on their faces.  I heard, “but you’re not married!  What if you want more kids one day?”  For me it was a no Brainer, I was a single parent. I kind of had to be alive to raise the two children I had.  If doing a hysterectomy would allow that to happen, that was the decision.  I had to go see a psychiatrist to make sure I was capable of making such a decision all by myself?!???!…. I did. Still smh about that.  Yay the hysterectomy worked!  No more cancer! 

I think this was the first time I did the whole “inventory” thing.  My biggest fear during all that time was that my kids wouldn’t KNOW me.  The real me.  The one who makes mistakes 2 or 3 times before learning a lesson.  I started making photo album journal diaries for the kids.  I made albums containing my deepest darkest secrets, and ones for each year of each of their lives.

But I digress.  As I look back over the last 48 years of my life, I can honestly say that I’m not disappointed.  I have made ALOT of mistakes, and have learned most lessons the hard way, but there is no doubt that I HAVE LIVED!  Looking into the future, I am not even a little bit worried about girls and their families.  If something were to happen to me, I believe they would both step into the role of taking care of my parents.  They would even check in on Einstein for me. Can I really ask for more?

With all of that being said, I think I am ready to take the next step and make the switch to Ocrevus. The 3 disease modifying drugs that I was considering all require a certain blood tests before beginning treatment. I have had the tests completed. The next step is waiting for approval from the insurance and drug company. I won’t be “sitting” here waiting. I have a life to live, and Monday morning I’m heading out to see the grandkids to do just that!

Decisions, decisions, decisions

~ msgracefulnot ~ 13 Comments

I can’t tell you how many times or with how many different people I have had this SAME conversation. This time something changed.

I have been on Tysabri for almost 13 years. That is means close to 140 infusions. I don’t know the exact number, but I’m pretty sure Biogen (the company that makes the drug) could give you an exact number, as well as my JCV number, how many lesions I have on my brain and spinal cord, etc.

Facts we know:

  1. The longer you are on Tysabri, the more likely you are to develop a deadly brain virus called PML. Because of this, most doctors only prescribe Tysabri for a few years before recommending a different drug.
  2. While on Tysabri you have to have blood tests for the JC Virus every 6 months and an annual MRI to monitor your risks for developing PML.

Two years ago, not only did I test positive for the JC virus, but my numbers were quite high. (1 is bad, I was at 3.43.) My neurologist suggested that I consider changing to a different MS treatment. I refused. Tysabri has been a miracle drug for me. (Many posts about it) I did however agree to more frequent JCV testing and MRI’s. I am supposed to go every 4 months, but I haven’t because….well life.

Over the next 6 months, my JC numbers continued to climb to 4.69, so I made what I feel was another concession. Instead of getting an infusion of Tysabri, every 4 weeks, I would allow them to extend the time between doses to 6 weeks. (Personally, I hate the longer time in between infusions, because the last 3 weeks are “slump weeks” for me, but my numbers have stopped increasing.) They are still high, but haven’t gone up, so that’s a good thing.

This last year I’ve noticed that I am more fatigued. I have trouble finding the right words and expressing my thoughts, and my legs are heavier and painful each night. I have been shrugging it off, and attributing it to the longer intervals between Tysabri infusions, the fact that I am getting older, and the additional stresses in my life. (taking care of my parents, covid, and dealing with people in general) , but my last MRI shows that I have new lesions in locations that correspond to my symptoms.

The entire time I was taking Tysabri (at 4 week intervals), I had no disease progression or increase in lesions. (Apparently a six week dosing schedule does not prevent relapses for me) The medical community considers the risks of pml too high for me to go back to a 4 week schedule, so maybe it’s finally time to change?

I’m scared that I am going to start having frequent relapses. I don’t want to go down that road again.

Before Tysabri, I was in a wheelchair. I know it’s not the end of the world, but still. I was severely depressed and was being hospitalized for MS flares approximately every 3 months. Not the kind of life I wanted to live.

I am also pretty scared of some of the side effects of the other drug options available. 😦

I come to wordpress when I need to “get out of my head”. Thank you for allowing me to do that, and reading along. It helps to not feel so alone.