I'm a nurse, so I understand the “when you hear hoofbeats, think horses, not zebras” mentality. But after this experience, I feel like multiple neurologists completely dismissed me.

My twin and I both have this condition, and we were repeatedly told we had tics/Tourette's despite explaining that we had no premonitory urge. For a while, we both had suspected some type of myoclonus or dystonia. Even when a resident seemed receptive to the idea, the attending quickly shut it down. The attending came in, asked a few questions like "does it get worse with anxiety and caffeine (yes)," and promptly insisted it was tics. He went on to explain that I was probably so accustomed to my tics that I no longer noticed the urges. My brother and I kind of just resolved to the fact that we have tics. I even went to a tic clinic and spent a ridiculous amount on it. I convinced myself I just lacked the willpower to feel an urge, let alone control them. I also have somatic OCD and that made me question whether I was imagining things, being dramatic, or going down a "what if/uncertainty" rabbit hole.

Years later (a few weeks ago), frustrated by my neck movements interfering with my job, I started researching again. Then I discovered SGCE myoclonus-dystonia, also known as alcohol-responsive myoclonus. Weird, my twin and I both experience significant symptom relief with alcohol. The genetics (autosomal dominant with maternal imprinting) fit our family history, too: my paternal grandmother had similar “tics,” my father doesn't, and my twin and I do. The lightning-like neck jerks, along with the association with OCD and phobias, made me damn-near certain this is what I had.

I was a bit worried that I was just falling into another one of my medical OCD rabbit holes. I told myself I'm getting a genetic test one way or another and if this is negative, I'm done searching for zebras. I met with an online genetic counselor, explained my thoughts, told them I wanted my SGCE genes tested, and they agreed it made sense.

I got my results today.

POSITIVE. I FUCKING KNEW IT!

Ngl, I almost cried because I felt so relieved just to know what this is. I don't even care if treatments don't work as well as I would like. I just wanted to be told, for once, that it wasn't fucking tics.

My Dr talked about possibly taking dystonic tremors specific medication instead of my muscle relaxer . Please what are your experiences with these meds pros and cons .

WHAT: Ipsen, the company that manufactures Dysport (an alternative to Botox), is testing a new formulation of botulinum toxin (botox) they say can last six months. Right now it's called IPN10200. Here's the trial: https://clinicaltrials.gov/study/NCT06937931

WHY: Ipsen has engineered a different and new molecule for botulinum toxin. It combines properties from type-A toxins (Botox, Xeomin, Dysport, Daxxify) with type-B (Myobloc). They've done clinical tests for cosmetic applications and early data shows it lasts longer, and now they are investigating how well it works for cervical dystonia.

WHO: Patients with cervical dystonia can participate in the trial. They are excluding people whose CD is primarily head back (retrocollis) and head down (anterocollis). Full eligibility criteria is here: https://clinicaltrials.gov/study/NCT06937931#participation-criteria

If botox doesn't work for you now, this is not a trial to try again. This trial is best-suited for people who get good results already and would like to test out a product that lasts longer.

WHERE: They are recruiting volunteers across the globe: coast-to-coast in the U.S., around the UK, and across Spain, Italy, Germany, France, Poland and Czechia.

U.S. trial info: https://clinicaltrials.gov/study/NCT06937931
Europe trial info: https://euclinicaltrials.eu/search-for-clinical-trials/?lang=en&EUCT=2024-519248-34-00

HOW: If you are interested, you can contact the trial director at the links above. Thanks to everyone to agrees to participate these important clinical trials!

Anyone with cervical dystonia noticed changes during chemotherapy?

I (33f) was officially diagnosed with Cervical Dystonia last Monday, and I’m beyond relieved to finally have an official diagnosis. I went through 7 doctors, multiple hours of PT, Chiropractic adjustments, dry needling, acupuncture, etc.

For the longest time I felt that I had dystonia all along. As much as it sucks to know I’ll have this for the rest of my life it’s a breath of fresh air that a doctor finally listened, and I’ll start Botox treatment soon. I’m truly hoping it’ll give me some relief.

My everyday symptoms are: right upper trap constantly inflamed, constant shoulder pain/burning, head tilt to right, constant pulling to the right with right shoulder raising to ear, neck tightness, and not being able to hold my head up (mostly in the morning)

As a person who was pretty active before I’m hoping to get my to a somewhat “normal” life again. I think I might cry when I’m able to simply just walk my dog again without being in constant pain.

For those of you looking for answers do not give up!

As a sufferer for over 4 years with no treatment, how on earth do other people in my situation manage with daily life, social life ,work , dating. The physical aspects as well as the emotional and mental toll with how self conscious it can make you feel and how exhausting it can be?

On top of this I take care of a family member who also has their own set of health issues. If I didn’t have them in my life, I’d probably just end mine at the rate things are going. Things are only getting more expensive and my pain and discomfort just keeps getting worse. I don’t know what to do anymore.

Edit: when the Botox was working I was working a job and felt free, but unfortunately this all ended up not working. Had to leave the job. Looking into xeomin now but Dr. said I’d have to wait til 2 treatments from now, which is like 4 months away.

What was your experience? Do you have any tips or tools that you recommend?

Looking back, I think I've had mild symptoms for 2 years now. I've been trying to treat migraine for about 3 years. I started trigger point injections 4 weeks ago. My muscle spasms went from a few minor ones per day to constant. I mentioned it at my last tpi appointment and left with a cervical dystonia diagnosis. Now I'm waiting on botox approval. It feels like the CD went from a 5 to 100 within a few weeks. Has anyone else had this experience?

A weighted heating pad around my neck seems to help stop my neck from wanting to turn but I can't use that at work. Any suggestions?

What are your favourite tools for relief?

Hey all. I’m about 16 days into my first Botox round (120 units) but I’m abysmal at making charts. I did a small progress note on day 11, but I didn’t do the best job at this. How do you all do it? What is the best layout and since it’s been two weeks plus, how do I recollect everything that I’ve experienced?

Thanks in advance.

I've been seeing a neurologist for about a year and half. She did a great job dialing in the right injection medication and locations, which seems very difficult and involved some trial and error. When she uses the EMG, she digs around a bit to find just the right spot where the tremor is loudest, so it takes time, but seems to be the most effective.

EDIT for clarity: This round did not go well, and as the days pass the tremor gets worse and worse. I dread the next 2.5 months before my next injections. Well, she's now leaving my health insurance. I've seen another doctor who really wasn't given the time she needed and, while she used EMG, didn't really seem to wait for just the right spot where it was loudest. I'm planning to have a conversation and get the two doctors to talk to each other about the best method, hopefully the new one will be willing to hear me out.

I'm so frustrated and tired. This has been a multi-year saga of not being listened to, having medication after medication fail, while having this tremor that makes it so hard to just exist as a person and a worker. I need some relief. I'd be willing to switch insurances for the right doctor. I'm at my wit's end.

My handwriting suddenly changed horribly and my fingers on my right hand are very stiff and hard to close. Is this my dystonia hopping? Lol 😂 I already have it on both sides of my neck and down my back but now my right hand is acting a fool. My handwriting was pretty decent too.

Hello everyone, I am a design student who is currently researching on AFO users and their daily experiences, I have prepared an anonymous survey that will just take a few minutes, will appreciate it if you fill it up! Link to survey: https://forms.gle/dRNeu3GSkKR8fcDq8

I developed oromandibular dystonia during pregnancy about 2 years ago although it was only diagnosed a year ago when I was finally referred to the right doctor. My symptoms have continued after giving birth and gotten worse leading to long periods of extremely painful spasms of my jaw and tongue. During my spasms, my jaw deviates and I am unable to voluntarily move my jaw/mouth and I struggle to keep my tongue in my mouth and avoid biting on my tongue. I have been doing botox injections with a neurologist for a few months and seen some improvement but I am still having to take muscle relaxants twice a day to prevent spasms. I want to have another child and so it is important to me that I stop taking the muscle relaxants as there is little to no evidence of the safety of taking them during pregnancy. I have tried physical therapy and most of what I was taught was just stretching. I am interested in learning if there are any other lifestyle changes anyone has seen to have been helpful or any "tricks" to alleviating symptoms (for instance, I have found that trying to drink through a straw when I am having tongue spasms will stop them for a few seconds although it is not long-lasting relief). I know that nobody can give me any medical advice, but I am looking for any tips anyone can give me who may have a similar experience including anything you've found to help prevent or stop spasms.

Did you know you can re-check your WES data for newly discovered genes? It's recommended to do so after 4 years.

I'm aware of the side effects from this. But my question is does Artane work better used consistently everyday or less often? I've issues with building tolerances to medication before. My neurologist acted like it was the go to med since Baclofen doesn't really work for me. Thanks

I’ve taken levadopa (cardopa/levadopa 25/100) for two years in October. There are times it’s obvious within 30 minutes my spastic movements and rigidity stop-those times are rare.
I’ve been using an Ai tool to log symptoms and the trend is at 30 minutes nothing changes in 85% of my episodes and I have to take a 2nd dose. The problem is I find two doses sedating. I can’t take 2 tablets during the day or I will fall asleep. If I don’t physically fall asleep I feel so drowsy I can’t function. If I take more than 2 doses my cognitive functioning drops (think 3 kitchen fires). My neuro is going to ask me if this medication is working and I don’t know how to answer.
Yes it works but I can’t complete ADLs because it’s do sedating; so I’m basically non functioning. Yes it works but the side effects are horrible. Yes it works 15% of the time. If I say that he will simply up the dose and consequently raise the cognitive disfunction. In addition the side effects of inability to sleep, appetite suppressant and Gastro issues make it not so fun.
I’ve had this conversation with him that the side effects are intense and his response was it’s the only thing out there.

Forgive my lack grammar and typing and explaining.

Can someone share what doctor/location/hospital doses Botox under emg guidance please? I’m in south Florida and Michigan but will travel for this. Thank you!

Hello I had Botox for the first time around 7 weeks ago and it’s really helped my head tremor. However, I’ve had hot flushes ever since!! I have at least one flush every hour that lasts about 2 minutes. I’ll also get very cold but when I put a sweater on I’ll be way too hot. Now, I’m 49 so may be menopause symptoms but they started a few days after the injections. Has anyone had anything similar.

I’m in the uk and have no access to speak to the NHS neurologist and he also told me that if I have side effects there’s nothing that can be done anyway.

I have cervical dystonia. Previously dont botox treatments, but the clinic near me no longer offers this. I have found a massage place that does Rolfing, and from the little ive researched, it sounds like it could provide some relief. Has anyone had experience with this? Tia!

If anyone here has had Botox or other neurotoxin injections in Mexico, where did you do it and how much did it cost? Thanks!

Been doing Botox for over a year now (I think) and at one point it was a literal cure and for some time I felt free again, but the last 3 treatments have started to not work nearly as well as it used to. I increased my dosage the last two visits but it didn’t change a thing unfortunately

Now I’m back to my neck feeling like shit and feeling like I’m unhinged, in constant discomfort, and when the big episodes occur I feel so fucking disoriented I feel like giving up. Back to trying everything and anything that I can to fix it, yet it most likely won’t

People with Botox experience: Can you tell which muscles they might inject in my neck for my dystonia? I’m scheduled for Thursday but have no other information.

i had a very intense spasm yesterday that lasted over 4 hours. my head and neck were twisting in all directions, and i had jaw spasms and teeth grinding as well. even some twitching in my abdomen??

my neck/shoulders/back usually always hurt but the pain is worse when i’m recovering from a recent spasm episode… i learned after an mri that i have bulging discs in my upper spine and due to the way my neck spasms, my left shoulder sits higher than my right shoulder

now i’m laying in bed trying to sleep but it’s so hard with the pain in my neck. i took a hot shower and slathered pain ointment all over my neck and shoulders and i’ve taken my muscle relaxer and pain meds but it has done little to touch the pain

in these moments i remember the brutal truth that this condition is chronic and i’ll live the rest of my life like this… in pain and anxiously awaiting the next debilitating spasm.

how do you guys cope with this? right now my biggest comfort and hyperfixation is dolls (american girl, monster high, etc) it’s one of the few things bringing some comfort and light into my life right now