If anyone has any experience with the onset of clenched first and wrist flexion, I would appreciate it. Have a daughter that was diagnosed with FND that has been living with right foot drop (and no sensation in that foot) and after a car accident this past week has all of a sudden developed a clenched first. So very worried and hoping this gets to someone that has a similar story that can help. Much appreicated.
Clenched Fist with wrist Flexion - Functional Neurol...
Clenched Fist with wrist Flexion
I want to start by saying, I hope your Daughter is okay. I can imagine what it is like to watch your child going through this. I am not a Dad but actively speaking to those in my family, in regards to what I am going through, that level of stress you cannot cut with a knife.
Now, from what you are saying.. I am not a Dr, so take that as such. I am very educated on the human body and in my current shoes plan to become a Dr. Please, whatever your Daughter is feeling, if she feels the need to go to an ER, pursue medical information from others, I implore that. Do that for your Daughter. Be there for her. I don't say this in regards that you don't. I speak from my own experiences.
Now, from my unoffical medical opinion, the foot and hand are two different issues. Lack of sensation could mean a lot of things. Along with dropped foot. When you say no sensation, is this like a numb feeling? Is it something like I explain as like static from older TVs? Is there pain, no pain, can't feel even a brick hit her foot (don't test it like this! I am more trying trying to understand level of sensation.)
The hand, is this... Lack of a better term a sensation only from half the forearm to the hand? I ask, and granted, I have different issues, so I may not be able to fully empathize. I simply ask how far of the feeling goes and more information on the feeling. Naturally, we have tendons in the lower forearm, that if those hurt from constant contracting of the hand. Especially after a bad car accident.. Which, I want to say I am glad she is okay. Yes, hand issues are devasating.. Please don't take my sentiment as nochalant. I had to teach myself to be left handed. I understand from that. All that said, it sounds like to me... Nerve damage in the arm. I say this simply off of what I know.
To say, it is common, to have dystonia in one foot, one hand, your neck, and so on and so forth inthe whole body. What I will say, the onset of both the foot and hand being seperate, and the way described, they don't seem like the same issue. I want to think, your Daughter's foot is a form on Dystonia. There are ways and simple things that can help her! I do not know nor will I ask what country you are in. I am here in the states, so the medicine that could help her with her foot, if the Dr feels it is simply there, Botox shows for the area of the body, I hear they are incredible. This is from speaking to other people who have this done every 6 months, quality of life changing.
Her hand, I would say start with gathering more information how it feels, which I'm sorry if that upsets you, I don't mean it badly. After than, at least ways to describe it, see your GP or another Dr. Explain the symptoms, where they are at, how they feel, do they come and go, is it constant, is it there constantly and gets worse, etc etc. It sounds like some happened to her peripheral nervous system, examples of this are carpal tunnel, trigger finger. The damage to the hand via external trauma. If it was deemed not caused by external damage, I would still say pursue the information further. I do not mean to potentially inflame a situation. I am and always try to be the best I can to help and be honest. The longer she contracts her hand like this, the more difficult it may come to healing and recovery. Not saying it is impossible, she will need more help with it.
All this said, I do have other questions, but I don't want to overload. I am not a Dr, please don't take my advise as fact. I hate seeing people hurt, espeically having met parents during my process.. The sadness and desperation in their eyes... It brings me to tears. Keep us posted, I know for a fact, we all are here to help each other. All this said, medicaiton I take, it is for another issue, I am here to help others through their FND, as I have helped many others find another reason for their pain. I know that if I do have it, it isn't the heart of my problems. It is a tertiary symptom from other problems.
With this, I wish you and your Daughter the absolute best. If you would like, please let us know. My page and my posts, range for a little over a year now. Talking and venting on my journey through the neuro medical field. Check out my posts, if any of it helps, I am so glad. I am here for you and everybody. If you have any questions, feel free to post them or message me. I am here to help. I promise.
Thanks for taking the time to reply. I am in the US. Can you tell me what kind of scenarios were assisted with Botox? We just don't want this to be a "fixed" dystonia. Hoping to see an Occumpational Thearapist today.
Thank you very much, for a number of reasons. Trusting me with your story. Asking me more information. And allowing me to share my understandings of Neuro, to help you and your Daughter. In the humblist of ways.
The sad thing with dystonia... Well, if you see it as sad, which many do. I say, as somebody with ALS and dystonia being a symptom of ALS among others. I have been able to experience a lot of different information with it. I do not see it as sad, but I see it as, we are trying. That is my outlook, that I will not project it on you. Dystonia affects us all very differently. For me, due to the ALS... It not only is caused by ALS but also it mutated a gene. This gene is the KMT-2B gene. childhood generalized dystonia. The odd thing, is I was 25 when it happened. Knowing my history and how I handle stress... I had organ failure for years at the typical age group this would activate. So, the more my Dr and I dug... Trying new medication... It clicked in my head... And after only 4 visits, when on the 3rd one I said, "There is another neuro problem.. My symptoms are too all over the place for it to be one. Plus, I handle stress very well." My dr nodded and the next visit, we both knew.. The medications I take... In less than 6 weeks... I went from the lowest dose... To the highest. Because I would have a few days where it worked, then get drastically worse, very worse. Then another med was added... It helps remove the pain, but reality? I am still getting worse... Both of these medications are tools to help diagnose ALS... That last visit, I looked my Dr in the eyes... And she nodded her head crying that I do have ALS.
I share all of this, more to kind of help you understand my path and also to help understand how dytonia is both a symptom and a diagnosis. I also share my path, to in ways, help you know... I am a person you can trust and I will do my best to help. I am here on Bonus time. I want to live as long than Steven Hawking, to be here. Every single day.
So the sad part about dystonia... You won't be "fixed." You won't be "cured." There is no cure. There is no fix. Dystonia can be caused in many ways but if it is a Diagnosis, then only 3. In your case, from my unprofessional opinion.. Your Daughters foot, is a seperate issue from her hand. So botox injections might seem like a "fix" or a "band-aid." Sadly, there is no cure. I am glad you are pursuing a wholistic way even getting help from PT and OT (physical/ocupational therapy.) For a number of reasons. They will be able to help your Daughter learn ways to help her. I won't list off all of the effects that will happen to her body if she goes without treatment or help. I say this, out of respect for you, for how stressed you are at this time, and I don't want to scare you. What I have going on is proven to be multi facisted. Which, yes I do believe her foot and hand are different. My case is different. The long term effects, unless you are okay with me sharing. Can affect the rest of her life. Quality of life. I will leave it at that to allow you to process that.
Before I leave you with all of that, I don't mean leave, allow this to be my current message. I am so sorry you are going through this. I want you to be aware, me being recently diagnosed... My mind is in full throttle help people. Be there for people. At times, and this is something my neurologist, PT, and my therapist tell me is... As much as I know and as much as I want to help people. What I am going through is a lot. I can paint pictures in people's heads, that for me... I see as help. What it is doing is scaring people. I go too much, too fast, and I need to make sure the person I am sharing ideas for help. If they are okay.
With this all said, I know you are a Mother who wants to save your Daughter in everyway. In fact, I cannot even begin to know the feeling and thoughts you have. Actively watcher her, wanting information as quickly as possible to help. I do have lots of knowledge that can help. I also don't want to overload you with information and make your head very upset, which can cause major anxiety, and whether it is physically or subconsiously affect the others around you. Especially your daughter. I am not saying you need to stop or slow down, I would never tell a parent that... You are doing everything you can to help her. I have had to have very difficult conversations with my Mom. Conversations, I won't share details. In short, no mother needs to her.
So before I share more... I want to make sure you are okay to hear more. I want to make sure you know that yes, I can and will help. I want you to be able to tell me if/when I have said too much or not enough. This is me trying to be very transparent, based off of what I have learned and what I have been told. If I have said too much, I am sorry. It isn't the intention. I also ask, please don't think of me as bad for saying all this. I am not trying to project my theories on to you. I genuinely want you and your Daughter to have the best mental states through this process.
With the best and most regards in everyway possible,
when my hand did this I found massaging my arm helped moving down into my hand and it would slowly release the clenched hand. If nobody was around I used to have to stretch my hand over my knee massaging as I did it and my hand would slowly release it was uncomfortable even painful at times but that did help me personally. My hand still does weird stuff from time to time even now but it did improve on the whole but there lways seems to be a new thing in a different place drives me crazy.
thanks for your reply. did you pursue any treatments or medications?
No I prefer not to take medication if at all possible