In my last post I said that I would explain what has been going on physically. Here goes…
On November 27th, with a referral from the ALS Clinic, I attended the Spasticity Clinic at GF Strong. The reason for the visit was because of the extreme stiffness in my legs which cause a lot of discomfort. Upon examination I was told that Botox injections into the leg muscles would cause the muscles to relax and therefore alleviate the pain. The doctor said that the risk of weakness travelling to other areas of the body was extremely rare and that she had never witnessed that happening. I was so excited by the thought of some relief I agreed to get the injections.
Fast forward a week and I started noticing weakness in my legs and neck. In the next ten days it got so bad that I could no longer stand to transfer or hold up my head at all. I went from sitting at my kitchen table in a dining chair for up to eight hours a day, to not having the strength to sit for five minutes. In addition to the leg and neck weakness I also started not being able to swallow any of my saliva, I lost the ability to cough and worst of all, I had a lot of difficulty breathing at times throughout the day. I have even had to use my breathing machine during the day which I have never done before. So to say I was experiencing side effects from the Botox would be an understatement.
My Aunt saw the following Botox warning and sent to me.
This is just part of the side effects on the Botox website (you, I think, had all of them listed) which is part of the warning that I saw on their TV ad:
IMPORTANT SAFETY INFORMATION
Tell your doctor about all your muscle or nerve conditions such as ALS or Lou Gehrig’s disease, myasthenia gravis, or
Lambert-Eaton syndrome, as you may be at increased risk of serious side effects including difficulty swallowing and difficulty
breathing from typical doses of BOTOX®
I would have appreciated getting these precautions before accepting the injections. I obviously never would have proceeded. I shared all that had happened since the injections with the doctor, and she was surprised. It turns out she has only had experience with a few ALS patients, which is information I should have been given. Her takeaway..”maybe people with ALS can’t tolerate the normal dose”. I told her that I didn’t appreciate being a guinea pig.
There is a real disconnect at BC’s ALS Clinic. There is no one neurologist heading up the clinic. My neurologist and others only work there once per week. There is no respiratory therapist at the clinic. This really makes no sense to me as breathing or the lack thereof is one of the hallmarks of the disease. I have now experienced first hand the result of a broken system.
I have had to adjust to losing the equivalent of two years of function in a matter of ten days. It has not only been challenging for me, but for my caregivers as well. We have had to come up with alternate ways of transferring, seating, using my tablet, washing, dressing and attempting to manage secretions. I will be honest in saying that the past two months have been so overwhelming and I have been extremely depressed. I keep thinking if only I had done my due diligence beforehand, I wouldn’t be in this mess. I am usually ultra cautious and don’t even start taking a supplement without researching it first.
One possible bit of hope is that the Botox and its effects are supposed to wear off after about three months. That is for a normal case with a typical dose. I am unsure of what to expect. I do know that with ALS if you don’t use something you lose it quickly. I have already noticed that my calf muscles have shrunken considerably so it’s most likely that I will not be able to stand to transfer even if the effects wear off. I guess I will have to wait and see. I sure would appreciate your prayers that the effects will wear off and that my function returns to what it was pre-Botox.
Thanks for reading…
Leanne xo
Oh Leanne 😔 I’m so sorry that the BC ALS clinic is so under par, to say the least. I’m disappointed that your Dr who administered the Botox was not more knowledgeable and transparent with the knowledge she has and doesn’t have. I’m hoping the effects wear off soon and muscle use can be saved…. Love you lots ❤️
Leanne I am so sorry that this has happened and of course I Pray morning, night and whenever I think of you. I don’t know anyone who isn’t more diligent than you are. Don’t lose hope Leanne, we are All Praying for You that you get the strength back in your legs, neck, throat and your breathing return to normal. I hope the effects will wear off quickly and that your function returns to what it was pre-Botox. Don’t lose Hope, I Pray for a speedy recovery. For Faith, hope, cures and comfort God Bless You. All My Love, Elaine
Oh Leanne, I’ll be praying the effects of the Botox wear off quickly and completely and for restoration to the functions it has taken.
So sad the BC ALS can’t be more on top of this disease. Praying also that there be improvement in the science and care they give.
Love & blessings ♥️🙏🏼
Patti
Leanne,
Thank you for sharing so honestly. My prayers are with you and all your caregivers. May you all continue to have strength and hope.
Love Deb 💕
Leanne,
I really appreciate your sharing this update, and I am so sorry that this happened to you. ALS is brutal enough on its own; this adds insult to injury. I can imagine how betrayed you feel by the medical establishment. I am hopeful that you will experience an improvement as the Botox wears off. I receive Botox injections for spasticity in my jaw muscles every three months, and I notice that the (beneficial) effects wear off in under three months. I haven’t experienced negative side effects, but I had already developed most of the problems you describe. I am really angry on your behalf and on behalf of pALS everywhere. There is no excuse for such a shoddy approach to care.
Your in my prayers for healing and wholeness.
– Jessie
Really shocking that this can occur and there is just no excuse for it. Please don’t blame yourself, Leanne – managing this disease is overwhelming and one would think that we could depend on the advice of specialists. Grrrrrrr. I really do hope that the Botox side effects fade quickly for you. Thank you for sharing with the ALS community. Best, Sara
So very sorry to hear this. Wish I could do something to make it better! You don’t need this extra stress 🙁 Holding you close in my thoughts and prayers.
LeeAnne …. I am so very sorry this has happened……. I am praying for some comfort and ease for you.🙏🏻🙏🏻🙏🏻❤️
Leanne, I am so sorry you are experiencing these side effects. How scary, when you were expecting relief! The Dr should have researched how this treatment is best administered to ALS patients, don’t take the blame for that. It is so unfortunate that the ALS clinic isn’t more comprehensive and accessible for ALS patients to get the care they need when they need it. Praying for strength and healing and peace that passes understanding as you wait for these effects to wear off 💛
I am so sorry to hear this, Leanne! It really is upsetting that you were not informed of the side effects. I certainly will keep you, your caregivers, and your family in my prayers!
How aggravating!
Dear Lord Jesus,
Lay your hands on Leanne and remove all Botox from her body as quickly as possible. Help keep her as much function as possible plus some. Lord, help Leanne forgive the idiot doctor for they know not what they do. Lord please give her strength and peace that can only come from you. Lord be her refuge and her rock she leans on.
💔praying the side effects are released from your body sooner than later. So sorry this happened Leanne. Always in my thoughts and prayers.
That is a terrible setback Leanne, I am definitely praying for your strength pre-injection to return & that God will miraculously reverse the effects of this dr’s blunder. I have long held the belief that anyone having to rely on the medical system needs to have a full time advocate to navigate all the processes & recommended meds, treatments etc. I can’t tell you how often I have seen with my own eyes the effects of incongruent treatment leading to failure to do no harm. I pray for you to have peace in this as only God can give so that your stress over these events doesn’t also cause more harm. Bless you Leanne, forgive if you can so that your body doesn’t hold the lingering bitterness that this would cause anyone in your position.
I actually do feel very hopeful that you will regain some strength after the Botox has worn off (which could take up to 6 months in total).
I sort of cringed as soon as I read anything Botox related – giving a muscle-paralyzing agent to an ALS patient. Geez! In fact, even at the end of Botox commercials, it’s stated to alert your doctor if you’ve been diagnosed with ALS or any other disease impacting muscles.
And, yes, the medical system is so very broken. People with ALS, auto immune disease, cancers and a host of other diseases are told they’re suffering anxiety for years, or that they’re hypochondriacs by specialists witnessing patients from illnesses they’re supposed to specialize in.
My good friend of 30 years was diagnosed with ALS after a year of the most absurd suggestions of what might be going on. It wasn’t until she choked on food and nearly died that she was FINALLY referred to an ALS center. And even there, the neurologist asked “so….what do you think is going on?” WTF?! I was livid! My friend had all-but lost her voice and her husband had to say “Well, I’ve been Googling and I’m thinking it’s either Progressive Bulbar Atrophy or ALS” and the doctor just nodded and said she was inclined to think so, too. Then my friend asked if there was anything that could be done and the doctor said “yes, we have some medications to treat ALS.”
So, my good friend who always saw the world wearing rose-colored glasses literally left the appointment believing she would be fine with treatment.
I cannot even describe to you the loss after loss after loss after loss she painfully suffered, believing she’d get better.
When people claim Medicare-for-All would be a horror, I honestly think to myself – HOW? I have colleagues in England who have the same level of care but aren’t going into debt – or losing their homes – to afford it. At LEAST there’s that.
Instead, we pay through the nose for healthcare only to receive a level of care no better than what the English get for a fraction of the cost.
By the way, 10 months before my friend was diagnosed, I’d already told her daughter she very obviously had ALS – because there was just really nothing more it could be (given the tests that had been exhausted). And this is the NY metro area with top hospitals, not some rural hospital in Alaska.
Awful.
But ending on a brighter note, I really think you will find improvement when the Botox wears off.
Best wishes.