Benign Fasciculation Syndrome

I decided to go with a post about Benign Fasciculation Syndrome (BFS) and what I've recently learned about it. So here we go... I have a feeling that most people with ALS have dealt with someone wanting opinions or advice about their muscles twitching. I see BFS come up in searches for about anything ALS related, and I have received a couple of messages from people concerned about their muscle twitches. I’ve seen a look of fear wash over peoples’ faces after mentioning muscle twitches as a symptom of my ALS.  I tell them muscle twitches are very common and it’s extremely rare for it to result in an ALS diagnosis. Most let it go there even though I have a feeling they run home and consult Dr. Google.

I became pretty frustrated not too long ago with a lady at Abby’s behavior class. I was trying to pay attention to what the instructor was doing. This lady walked over to me to ask what my condition was, being complete strangers made that the first rude question, but I politely told her. I am waiting to meet that person who truly already knows what it is. She goes on to ask how I was diagnosed and what my symptoms were. I had her at muscle twitches. She would not let up telling me about her muscles and asking my opinion and advice. She kept trying to make her muscle twitches fit my death sentence as she had been trotting around with two dogs on a leash in the next class separated by a small fence. So she’s standing there going on about her fears of having ALS, looking like the picture of health and I’m sitting there with something obviously wrong. I finally told her I needed to pay attention to what my dog was learning. I think I said it nicely. Once home I realized I was in my transfer chair borrowed from the ALS association that has an ALS sticker on a bottom bar of the chair. I think she knew I had ALS before ever approaching me. It did me no good but, I let it ruin my mood that evening.

I’ve since tried to be careful when using the words “muscle twitches.” I’ve felt twitches for years off and on, and if I’m going to be honest as I said I would be, I would have likely gone home and looked it up with a little fear too after meeting and hearing that from someone with ALS. I can say with certainty I wouldn’t keep on questioning the dying person and expressing my fears that I may have ALS too. That is very rude and if anybody is reading this and experiencing muscle twitches please, don’t put a person diagnosed with ALS through that.

If you have concerns, only a doctor can give you the answers. If your PCP sees reason for concern they will refer you to the right specialist. If not, you know your own body and can insist on seeing a specialist and go through all of the expensive testing. It’s only worth all that if you’ll believe the doctors and the test results if you’re told you’re fine. I’m not meaning to insinuate all people want something to be wrong.  It’s when you become obsessed and don’t believe what highly trained professionals are telling you that you most likely are dealing with a form of anxiety that is causing you to experience this fear.

After doing some looking up of my own lately I have learned there are people that have normal  twitches who have let anxiety set in, but I also learned that Benign fasciculation syndrome is very real and can come with some real side effects, in some cases forcing lifestyle changes. I didn’t know this until recently, and it gave me a new perspective on people dealing with this real condition and how it can be pretty scary until it’s definitively diagnosed. The path to diagnosis is very similar to ALS. It’s made by excluding all other possible causes. If you are diagnosed with BFS, peace of mind should come with learning it’s not going to kill you but, I do see how it can be a  frustrating experience when nobody is taking you serious. The word benign gives the impression everything is fine, and syndrome doesn't help either.

While it’s great news to learn you’ll live, it’s not comforting to know you’ll likely have cramping and fatigue which doesn’t feel benign. I imagine it’s not comforting going through that and only hearing how lucky you are. The fact remains it is great news you don’t have ALS.  It’s time to stop thinking about ALS and focus on ways to deal with and reduce the effects BFS has on you. Hopefully you can tune out the people in your life who make negative comments about your condition not being serious and focus on making the best of your situation and feel the relief of it not being a terminal condition instead of staying stuck in the anger of feeling misunderstood. ALS and BSF have been connected in a negative way between the feelings on both ends. I have certainly had my moments of thinking you should just shut up already because you will continue to walk, talk, eat, breath, live. We won’t.

This post is my way of saying to BFS sufferers that I understand a little more of where you’re frustration is coming from and the fear you experience. My wish is that you discuss your concerns about it with your doctor, not someone who is dealing with the terminal illness you fear. I don't mind at all a question asked to me if it's respected when I answer but, I can’t diagnose you or calm your fears. If you can’t afford to go to a doctor, please realize that if you do have ALS with that much muscle twitching, it will be recognized, and there is help available. It can and will reveal its ugly head in several ways most commonly by clinical weakness which must not be confused with perceived weakness. 

I don’t usually use Wikipedia as a reference but I believe it is described well and correct here about the difference between true and perceived weakness.

The difference: True weakness vs. perceived weakness

• True weakness (or neuromuscular) describes a condition where the force exerted by the muscles is less than would be expected, for example muscular dystrophy.

• Perceived weakness (or non-neuromuscular) describes a condition where a person feels more effort than normal is required to exert a given amount of force but actual muscle strength is normal, for example chronic fatigue syndrome.

My example of perceived weakness: A flight of stairs you commonly take seems more difficult and is making you more tire than usual. That is perceived weakness.

My example of true weakness: You start tripping on a flight of stairs you commonly take, you think you're lifting your foot high enough to clear the next step but you don't. That is true clinical weakness.

This is a video I came across. I think it describes true BFS well. I have no opinion about the the spices or nutritional supplements he speaks of.



I hopes this clears up some miconceptions about BFS.

Until next time, take care,

April

 

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Death with Dignity… My Thoughts

To my loved ones reading this, I want to say this is not a reflection of my intentions at this time.

It is something I believe most people with a terminal illness like ALS have had cross their mind. At this time a person diagnosed with ALS is aware they are dying, and it will likely be an uncomfortable slow death. I know there are a lot of patients who have chosen invasive ventilation and are happy, comfortable and living a life with quality and purpose. I’m thankful this life extending option is available.

There is hospice. Another thing I’m thankful for. I’ve experienced the care they provide and I commend all nurses who take on this responsibility. They can’t by law intentionally speed your death. They do everything they can to make death as comfortable as possible for the dying while educating and comforting the family. Even with the best efforts it is no guarantee you will have a comfortable death, or that they can predict the exact time or even day you will die.

You can put a do not resuscitate-DNR order in your Advanced Directive or Living Will, but if you’re at home and an ambulance is called because of respiratory crisis, unless they are shown the document, you will likely find yourself on an invasive ventilator no matter how clear you’ve made it to family and your doctor. It’s possible you will be even if they see the document. EMTs are trained to save lives and they do it well. I also commend them for all they do; however if you’re a terminally ill patient suddenly stuck with this life support that you made clear you didn’t want, you’ll surely not comfortable. You can still choose to have it removed, but when and how now has to be decided. Something you may have really wanted to avoid is your chosen legal agent being forced to make this decision. Choosing who can make decisions on your behalf early on is highly recommended so that your wishes are met. This doesn’t mean the decision is going to be easy for them if it comes to that.

I’ve given examples of what can go wrong even if you do all the right things to make your wishes clear, it’s no guarantee. You can still end up vented whether you want it or not.

Some benefits of assisted death: First is that it’s in your control. You know when your quality of life has reached the point of outweighing the benefits of living for you and know you will die painlessly within a few minutes. You can choose to have loved ones with you or not. It also gives your loved ones the ability to choose to be there or not. If it is decided others are to be present, you can choose a date and this gives them time to prepare emotionally and take time off work in advance instead of always knowing the call can come at any time.

I’m aware that one of the biggest obstacles for the terminally ill, even if they’re in a place that allows death with dignity is Religion, even if it’s not the belief of the person dying. Not wanting to go against a loved one’s belief is a huge deciding factor. A dying person usually doesn’t want to do something that leaves their loved ones in emotional despair. So they suffer on.

Many consider death something that should be left in their God’s hands. To me this makes no sense. If you would die without mechanical ventilation, isn’t that overriding God? I just don’t see the logic in it being miraculous to keep a life going that God obviously intended to end, but it’s not ok at all to end the suffering of a life God also obviously intends to end.  There are premature babies born every day with no chance of survival even with advanced technological care. That indicates this is God’s plan, his will, to end this life. When very aggressive methods are used to sustain this life, I never hear of anyone condemning the people involved. They are given hero status and it’s considered a miracle.

How can you rejoice in going against God’s will by saving a life God obviously is ending, but yet you damn a person to hell for deciding to end their life in a humane way when it’s a life that God is also obviously ending? I see no logic in that.

I have important decisions to make. One of the biggest factors is how my family is affected. I believe ultimately I will be supported in whatever I feel is best for me.

I think it’s wonderful we have and use the advanced technology to save a person that will otherwise die.

I also think it’s wonderful to have a choice to end a slow suffering death in a very simple, affordable and comfortable way. I emphasize the word choice.

These are thoughts I’m dealing with amongst many others, and that’s what this blog is for me. It’s an outlet for my thoughts and feelings. I’m thankful to not be progressing super fast, I am progressing though and I do have important choices to make.

Until next time, take care,

April

 

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