I Got Botox

I’ve had crow’s feet for a while. Not sure when they developed (is that the right word?) but they’ve been a presence for some time. I turned that age this year, I continue to deal with my disease and I felt the need to…HAH! I JEST…I can’t even go on. I do have crow’s feet but I actually love them; I feel like they enhance my smile. Anyhoo, the point of this post.

As you know, my left side, the more affected side – both upper and lower extremities get stiff. The medical term for what I deal with is Spasticity. In quite basic terms, Spasticity is an increased rigidity of muscles due to brain or spinal cord injury. It is a condition in which muscles stiffen or tighten, preventing normal fluid movement. The muscles remain contracted and resist being stretched, thus affecting movement, speech and gait. A number of muscles in my left hand, arm and leg are in a state of constant contraction hence the constant curl of the hand, bend in the arm and stiffness in the leg. A number of MS patients are afflicted by Spasticity and (my opinion is) that’s one of the reasons that our movements tend to look the same. Over time, I have observed that our movements are so similar and I’ve actually guessed an MS diagnosis correctly once or twice. Years ago, I was prescribed muscle relaxants to help. I was on one, then two, then one (again) medication with varying dosages. Then I started using CBD oil and I was able to decrease from 20mgs 4X daily to 20mgs daily. That is my current dosage and I guess it works for me, although the muscles are still tight and they continue to contract. If you see any pictures of me, you’ll see that left arm is always bent and the hand looks like I’m ready to coff down somebody. Luckily for me, the spastic limbs are not painful and trust me, that fact is not lost on me, so I don’t have to deal with pain on top of everything else.

As it turns out, Spasticity is also treated with Botox. Botox is used to kill the nerves of the rigid muscles, thus stopping them from being in a state of constant contraction. During one of our sessions last year, my Occupational Therapist brought it up and asked her manager to give her opinion and she thought that I was a good candidate for that treatment. I was officially evaluated for it in August this year. Of course, it wasn’t as simple as “you are good for Botox” and “your appointment is…”. We had to get approval from my insurance company and the wait for an appointment was long. Anyway, I went in for my first round of Botox injections with Gilbert on November 16.

I used to think that insurance was a big rip off, especially when I didn’t understand the ins and outs/terms/how it works etc. Years ago, as a healthy person, I used to get angry when they sent my Explanation of Benefits statements and I saw how much they didn’t pay and how much I had to come out of pocket. Over the years, I’ve come to completely understand the lingo, inner workings and I’ve also come to realise that I’m very lucky because my insurance is quite good – I also “stick with the devil I know” because I’ve been with the same company since my diagnosis and boy am I glad, that as a sick person, I have it! Anyway, so I’ve been approved for one session of Botox every three months for a year. That first session included 15 shots into multiple areas of my arm, ranging from my biceps to muscles just above my wrist on my inner forearm. I was a little nervous/scared; it does involve a needle and I had no idea how it would feel altho I’ve seen videos of people sitting quite still like nothing is happening (side note: people look the same way when they get tattoos and I howled, cussed and squirmed the entire time mine was being drawn). It was fine though, once or twice I felt a slight pinch but nothing to write home about. Good news is that it didn’t affect my ability to do anything by the time I got home and it was a normal day.

The thought process is that those overworked muscles are deadened so the patient can work on strengthening the opposing muscles in order to regain some normalcy. So now back to therapy I go. Gilbert wanted me to wait at least 2 weeks before I started so I had my evaluation appointment last week. As far as the reaction to the Botox itself so far? I wasn’t sure if it were mind over matter, my feeling as if my hand is less tense especially when I’m relaxed and doing nothing these days. It was promising that Chrstine, my OT found that there is less tone in that hand during her evaluation. Same with the arm, it’s easier for me to stretch it out without using the other one to assist or propelling my body forward to compensate for the lack of arm reach. There’s still work to do, they both still curl and bend, but they are certainly not as rigid. We will work on continued strengthening over the next few months. My next Botox session is in February, and at that time, based on my feedback, progress shown etc, Gilbert can choose to alter the amount of Botox or the number of shots. Like everything else with this MS, it’s always a trial-and-error process until we find what works.

There you have it. My Botox story – not for my wrinkles but for my wretched disease!

Stax

P.S. Insurance paid 100% which actually quite surprised me but hey! I’ll take the wins when I can.

CBD Oil

Cannabis

Disclaimer:I’m no expert and I apologise if my explanation below contains flaws. It’s a basic description in the simplest way I know how.

The cannabis plant produces families of compounds that may fall into one of two categories:

* Tetrahydrocannabinol (THC): the psychoactive component that makes us high.
* Cannabidiol (CBD) – non psychoactive and the component used for medicinal purposes

The CBD is extracted from the plant and used to make CBD Oil which is used for medicinal purposes. CBD Oil may also contain THC but the ratio of THC to CBD is so small that patients experience the healing benefits of the CBD without getting high off the THC. I’m not going to get into the legality debate that is happening all over the US, but it is legal to possess and use CBD Oil in Georgia for a list of diseases, one of which is Multiple Sclerosis. It’s mostly been used to treat the pain associated with MS (in fact, I’ve always heard that smoking weed alleviates pain), but has also found to help with spasticity. Enter Stacey …

My Experience

I’ve been taking a small amount 3 times a day for the past couple months or so. As I mentioned above, it’s most commonly known for alleviating pain but it has also has shown to help with spasticity in MS patients. I was glad to see that because I have no pain (knock on wood), but my left side is spactic – always stiff, difficult to move at times etc., so I was eager to start and to see what my experience would be.  I’m currently on a muscle relaxant (baclofen that is mentioned in the video) to help with the spasticity. Years ago, I was actually taking 2 muscle relaxants – if you’ve been reading my blog all along u might recall a pill I referred to as my sleepy pill, well that was one along with the Baclofen.  I believe that after my first round of Lemtrada, I stopped taking the sleepy pill because I found the spasticity was less severe. I continued taking Baclofen and still do to this day. At one point in the past I was actually taking  it 4 times a day but, also after Lemtrada, I went down to 3. Now remember that everything with this oil is somewhat experimental (for me) so everything’s been trial and error.

Soon after I started ingesting the oil (I put a couple of drops under my tongue), I noticed that my steps seemed more fluid – more natural if u will. I also thought that they appeared stronger. Of course I couldn’t help but think it was all in my head, but J was here in January and he saw it too (the last time he’d seen me was in May).  Hmmmmm. A few weeks after, I dropped a dose of the Baclofen so I was just taking one in the morning and one before I went to bed. Okay, that was fine but I knew that the rhell test would be if I could stop either the morning or night time dose. I’ve mentioned here before that when I don’t take my morning dose, I definitely feel the effects of not taking it. My left leg feels like there are 500lb weights attached to it and I just kinda pull it along where I need to go because of how stiff it gets. Similarly, when I don’t take the night dose, my movements are quite “robot like” when I wake up. I was afraid to stop either dose, because moving around how I just described is no fun, but I knew that I had to…and well, I eh go lie I really wanted to, just to see what would happen. 2 Mondays ago, I took the plunge, didn’t take the morning dose and braced myself for what might have come. Well. I haven’t restarted that morning dose and I’m just fine 🙂 No 500lb weights, no unbelievable stiffness and continued fluid movements. I’m really happy about that and I feel confident saying now that “it’s not all in my head”.

I haven’t told Gilbert that I started taking it and decreased my Baclofen doses yet although he knew that I’d been thinking about it.  Not sure when my next appointment is but I’ll tell him then.  Anyhoo, so time will tell where I go with this long term…we’ll see what happens.

Follow Me

Get the latest posts delivered to your mailbox: