So Yesterday sucked for anyone that is on my Facebook you for sure know this.
Yesterday I ended up back in the ER because it just became too much. Too much pain too many spasms it hurt every time I breathed in deep. They gave me three injections of Valium and Benadryl before it calmed down. I called my Doctor before going he called back about an hour after I had already been there. (well his nurse did) They said they weren't sure what to do just to see the ER Neuro and let them treat accordingly. I wish it was more productive like I go to the hospital where my doctor works but no one from his team can come down to treat me?! Not to mention they tell me they aren't sure what to do so just to let the ER doctors treat?! the ER know less than you do sir for sure! SO FRUSTRATING. They never even sent anyone from the on call neuro to see me just the attending. So I got home and maybe an hour in I start having another storm. To add salt to the wound they sent me home with paper work listing Generalized dystonia- Myoclonus dystonia symptoms, and complications. I was having ALL the complications. When they say report back to the ER if any of the following occur because they can possibly be life threatening, but they are occurring and they send you home anyway its just so defeating. Like They don't get it at all. My vital organs are STRESSED OUT. My body it telling me in every way possible. They need room to breathe. Then the nurse from my doctor called me tonight at 6 says the doctor just read my notes from the ER they are adding two more muscle relaxers on to my list of medications. How am I supposed to function? I am so... I don't even know what the word is. Clonazepam, Diazepam, and tizanidine. This will now be my normal regimen. BUT its fine and here is why. I am its not fine... but I have a back up plan.. I will do this but I am also going to just make an appointment with Mayo and have a consultation and pay for it out of pocket. See what they say, If they will be helpful I will apply for medical grants and do whatever it takes to get there. I am also going to look into this HYPERBARIC OXYGEN TANKS Because all the research says it does amazing things for people with brain disorders. I also wrote a letter to the NIH. If anyone has any more idea on what to try or who to reach out to don't hesitate to comment. I will look into any and all leads at this point.
Edit: I also have forgotten to mention as it has been a whirlwind of things around here that the doctors have also decided I do have a second dystonia as well . Generalized. I guess this is just very rare because myoclonus is usually a set of muscles only. But I have dystonia all over my body as well as Myoclonus all over. Go big or go home right? ;)
Kind of what we were talking about the last time I saw you (a few weeks ago) ... Dr.(s) go to medical school to learn how to prescribe drugs.. drug companies make money off of these Drs. ... and the cycle continues.... I think your plan for the Hyperbaric tanks is splendid ... I haven't researched them recently but I bet there is a clinic up in Phoenix somewhere... (I follow a website of a young boy who was hit on his head by a falling branch.. and he's showing remarkable improvement with the HOT therapy) ...I'd be willing to research your nutrition and essential oils ... or maybe try and help you find a homeopathic physician ... (If the "real" doctors can't solve the problem) ...
ReplyDeleteI am hoping to find one in phoenix and that it isn't outrageous. Also can you tell me where to buy essential oils? I will try that.
ReplyDeleteHi I have just read your blog I have Myoclonus Dystonia with the SGCE mutation confirmed as well as the psychiatric symptoms. I notice you say above that most of your body is affected. So is mine - I think because the disorder is rare and so variable it is poorly defined. I am particularly struggling with neck, foot and hand dystonia as well as trunk issues. My myoclonus is multi-focal. I also have Fibromyalgia secondary to MD. My dad and uncle and brother and 2 cousins have MD and my cousins 3 daughters have seem to have a psychiatric expression of the genes but no movement disorder (yet). All of us have tried medication without much success so we are looking for different pathways. Our local neurologists are not al that helpful despite claiming to be experts in the area. I am in South Australia.
ReplyDeleteOh my name is Katharine
DeleteDear FRIENDS,
ReplyDeletenow i have a beautiful smiling face and so are which you all, after reading my testimony. My name is kate, I am 31 years old,
And i live with my husband in Belgium, but I am from UK. I was diagnosed in 2012 with cervical dystonia. Doctors told me this condition was forever. I know how you feel and what you are going through, I just want to tell you that I am cured now,with the help of doctor williams herbal medication, the last time I can remember having cervical dystonia was in the summer of 2016. It was a long and difficult process but I am so thankful to dr williams I don't have it anymore. Please know you can be cured too. Accept what happened and is happening to you, forgive, let the past go, love yourself and others unconditionally and be thankful. Everything happens for a reason. If you want to get in contact with dr williams and share your own testimony and thoughts feel free to e-mail him on; drwilliams098675@gmail.com for advice and for his product.
Has anyone been down the natural science or homeopathic route? If you havent, please don't discount it. If you'd like to know what I'm talking about (and I'm not a doctor just someone with experience) contact me. gemmasgold@yahoo.com. I'll try to help you all I can.
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