Anyone dealing with Dystonia?

I was given a tentative diagnosis last week of abdominal dystonia. When I stand erect, the abd muscles go into spasms pulling my upper body forward making it difficult to get in enough oxygen. As soon as I sit down, I can breathe better. Muscles hurt during and after the spasms. In the morning I can walk/stand erect for about 30 minutes but during the day 3 minutes is about as long as I can stand before the spasms begin. I've had this since my extensive back surgery in April, 2017. The new movement disorder specialist who I saw last week is planning to start me on Austedo (deutetrabenazine)...if insurance will cover it. He said that Botox would be considered if the medicine doesn't work or I can't find resources to provide the med. I'm 73 years old. I have PD. Nancy from SC.

I have abdominal dystonia. It began 2 years ago after extensive spine surgery. I also have Parkinson's. When I stand up the muscles go into spasms, pulling my upper torso forward causing difficulty breathing. I had a test run of Botox. It didn't help. Two weeks ago I had a full dose. No improvement yet. The doctor guides the needle using ultra sound equipment. It is extremely painful having him press the equipment into my ribs. The shots don't hurt. The needle is very tiny and Botox doesn't hurt as it's being injected. Because of the US pain I'm not planning to have a repeat. I'll just have to learn to live with it.

Hello @sadnancy

I am sorry to hear of the difficulty you are having getting treatment for your abdominal dystonia. This sounds very difficult when I think of the pain, spasms, and difficulty breathing. I can understand that you might want to forgo further Botox injections due to the pain/pressure of the ultrasound equipment.

You also mentioned that you have Parkinson's. I would like to invite you to join the PD discussion group here on Connect. Here is the link, https://connect.mayoclinic.org/group/parkinsons-disease/?pg=6 to that discussion.

On Mayo Clinic's website, there is also information on dystonia. Here is a link to that information, https://connect.mayoclinic.org/group/parkinsons-disease/?pg=6.

While there doesn't appear to be a cure for dystonia, is there any physical therapy that might help you with the dystonia symptoms?

Thank you for your kind note. If PT would help, I would think my PD doctor would have ordered it. When I was getting PT 2 years ago, the therapists didn't know what to do about my inability to stand more than 3 minutes. I think they thought I was "making it up". I have just completed a 4-wk PT for muscle strengthening. The therapist refused to admit that I had a problem and just tolerated my needs to sit down. I don't think it is something they learn in PT school. FYI, I am in the PD group but have not been in touch for a while. What's the use? I'm only going to get worse.

Hi Sadnancy, I think you know this monster originates in the basal ganglia of the brain that controls movement. Mine is GENETIC! I find relatives because of this disease. I am from the south and my mom's family married and remarried each other over and over again. The disease spread like wildfire. Her 11 brothers and sisters mostly showed signs of the disease. Her 35 great aunts and uncles also showed signs. If not, they were carrying the gene or enzyme that causes the monster. It usually effects victims in mid-life and blacks do not get this disease like whites don't get sickle cell anemia, but everyone else gets this monster. My world famous neurologist told me that but I knew it! I am related to two famous people who have this disease. Sam Elliott, the actor has Spasmodic Torticollis just like me. Yes, we are related.The famous Ted Turner and I are related and he has limb dystonia. My uncle worked with him in Savannah and I've heard all my life we're related. Limb dystonia confirmed it. We need to gain awareness of this disease and I tried to contact Sam Elliott, but to no avail. I guess he thinks he's a big shot actor, so be it.

My first cousin is showing essential tremors of her head and neck and the doctor stated it was her thyroid. I told her "Kathy, it's a form of dystonia. My mom had essential tremors of her head and neck!" We are still being misdiagnosed, but I am smarter than many doctors who have never heard of the disease. I thought Sam Elliott could help us gain awareness, but not. I don't like Hollywood, anyway.

Many doctors don't have a clue. Make sure you contact a movement disorder neurologist. Get one who knows what they're doing. I'm going to one now and teaching him what to do. I'm a RN not a medical doctor. If he doesn't improve, I'm looking for a new movement disorder neurologist.

Klonopin has helped me along with Selective Denervation performed by Dr. Arce. Seven nerves severed. My throat was closing up and choking. Mom had the same problem and we can't smile. Smiling is hard to do. Sam Elliott's voice is deep and harsh because he has dysphonia. It's effected his vocal cords.

Hope that helps. Dorothy Rockwell Olson Williams

Thank you, @oakbourne, for all that information. I am also an RN and I research even before I go to the doctor. I'm kind of in a funk, not improving from the botox injections and having difficulty using the new high walker. It is very awkward to use and it "trips" over every crack in the sidewalk. Just like a rusty old truck, I'm breaking down. Life isn't fun anymore between my own issues and COVID restrictions. I'm hoping I'm near the end of my life.

I know how you feel. I have HNPP and CLL and no one knows what will happen when I have to go on treatment. Very frustrating. Most doctors never heard of HNPP. I always carry a copy of it and hand it to them.

I have generalized dystonia and dysphasia too and find it difficult to get any relief or help.

Courage and determination. I have been living with dystonia for 74 years and carbidopa-levodopa works like a miracle for me.

I have found any movement helps especially on toes rather than flat foot. For some reason running or dancing on tip toe works. Walking is great but I must be careful cause I can trip. I measured my foot drop so I must concentrate to make the right foot lift a bit higher. I forgot the other night and wow got a black and blue great toe.