So, How are You Doing Today ???
I just began this post as a way for everyone to share and reply to one of the most often missed questions of the day - " How are You doing today ? " Share your thoughts about how you are feeling today, how meds are affecting you today, twisting, symptoms, pain, etc. Basically How are you Today ???
beka
Open Forum... Talk about anything !!
beka
Open Forum... Talk about anything !!
Tags: appointments, coping, disorder, dystonia, events, experinces, feelings, living, medications, movement
Replies to This Discussion
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Permalink Reply by Alexis100 on -
Hey Everyone!
I am so glad to have found you on Facebook. Today I am really scared. I see my doctor on Tuesday, but it has been 9 weeks since the onset of my Secondary Generalized Paroxysmal Dystonia and the attacks just keep getting worse.
I am so new to the dystonia world, and need to advice, information and dystonic friends. I have to keep this illness a secret from most of my personal life as well as my business life, because I have already lost clients, due to my hospital stay. (Which I really cannot afford.) I work from home so I can get hide my symptoms and work around the aftermath the best I can.
As I mentioned, I was just diagnosed about 9 1/2 weeks ago. I also have MS and my Neurologist thought this was an MS flair and put me into the hospital gave me IV steroids for 5 days to no avail. I am still having “dystonic episodes” (I hope that is the right terminology) that involve both legs and both arms. Each episode lasts about three minutes and leaves me with pulled muscles, broken toes, completely wiped out, and in excruciating pain for days. Sometimes, I get some warning before an episode a mild fever and some numbness in my hands and feet. Other times, I get no warning at all. Also, it seems I can go a day or so without having one and then BAM! I have 3 to 6 in succession.
I am here because my Doctor does not seem to be of much help, in addition to my MS meds, (Valium and Vicodin) she started me on Dilantin and I was on that for six weeks with no change and so they took me off of it when I was in the hospital. My Neurologist has been on vacation ever since I left the hospital and the on-call neurologist only to tells me to go to ER and “take my chances”. So here I am sticking things out until my appointment.
Does anyone have any suggestions as to what I should ask her to do at my appointment? Medications, tests…anything you think would be helpful would be much appreciated. I am really scared and in tremendous pain and I hope someone out there can help me to understand all this more clearly.
Much Thanks!
Alexis 100
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Permalink Reply by Elaine on -
Hi Alexis,
I'm sorry I can't offer suggestions. But I thought we had some things in common.
I was dismissed by my Neuro after only 2 appts as having "Psychogenic" movements. We completely disagree with him and feel he just won't listen to us.
I believe I have Paroxysmal Dystonia. Like you I have I may have a primary condition which causes the dystonia (or movements). I'm not sure what to call mine because of the Neuro.
It helps me that the other specialist I'm seeing doesn't agree with the Neuro and feels he was premature in making any such dx, without all final dxs from the other specialists I am seeing.
I am a little bit different than you in the way I have movement episodes. Mine are usually brought on by fatigue.
I can have 1 or 2 every day. Or (which is not that often) go as long as two weeks if I rest ALL the time, without having one. They last around 20 minutes to a 1/2 hour each.
I can also have small episodes if someone touches a muscle that is sensitive.
About a month ago I went to the ER because of severe diarrhea. I figured I could kill 2 birds with 1 stone.
The diarrhea and the movements. I had 4 aggressive episodes in a row. They had no idea what to do with me.
Yesterday I felt really tired and still by the afternoon couldn't shake it. So knew an episode was on it's way.
I choke, because it grabs my neck. I called my son who works around the corner and he comes and sits with me until it's over.
Either he or my husband, whoever is the closest.
Every time this happens I feel anger towards the Neuro for abandoning me.
Because of the Neuro being so stubborn, I can't get put on any medications.
I'm seeing 2 specialists now and will likely be adding a 3rd.
Gastro, Endocrinoligist, and Rheumatalogist. I can't spell any of them. LOL
The condition(s) they dx me with may cause movements.
Or I could have up to 3 separate conditions.
I'll let them do what they need to....and when they are done, if I still need to, I'll find a new Neuro.
I don't want to wake up anymore and have to face another day. I have a fantasy about being put in a coma for about 3 months and waking up fully dxed.
Sometimes it gives support to have someone else who is like you.
Sorry I couldn't give you any more understanding of your illness....since I don't have much about myself.
Elaine
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Permalink Reply by beka on -
So, how is everyone doing ? The heat has finally resolved especially the humidity...my goodness , was I stiff at work this weekend.. but still made it thru...As some of you may know from my www.facebook.com web page I have new fotos of me riding horses...Yup, never thought that I could do it... but am finding it very therapeutic...seeems that animals really dont care what you have as long as they get treats and love...we have an Irish horse that seems to be the bully of the crowd...instignating others...He injured Tyler and a few other horses..kicking them... but during the humidity he was well-behaved .. stood like a frozen statue in the sun...not sure if horses get sun burn...? May be you know Ellen ?
Work was busy this weekend...plenty of patients .. but we all are now wondering about the Swine flu vaccine shortages.. but not sure if I really want to get it...not interested in being a experiment with the vaccine...
My sister in LA returned from Vegas and a trip to the Napa Valley.. Quite spectacular...especially the wineries...when I was in the Napa Valley a few years ago, really liked the Moldavi Wineries... fields of grapes...to the horizon...
The www.hamptonclassic.com is this weekend and will be heading ut there with friends on Long Island... to watch jumping...Don't quite know how the riders do this...won't attempt this at all right now...
Just got a flyer from Dystance for Dystonia- a run for Dystonia being held Sept 26 2009... will take the flyer to work with me and ask people to donate.. even if it is $ 1.00 at a time...Have done this before for other groups...why not ?
Just got the new www.care4dystonia.org site up...took alot of work...
Am reading a book on dismounting from horses right now...Jumped off like John Wayne the very first time...Not a good idea...plan on going to the beach as Summer winds down...can't believe we are close to September and Fall...urghh...
So, how you doing...Listening as always...
beka
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Permalink Reply by Rebekah on -
the work c4dystonia does. ever need any help? with anything? envelope licker?
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Permalink Reply by beka on
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Sounds like me , Becky ! Just came home from working 3 12 hour shifts in the ICU. The first nite wasnt bad. The last two nites turned into horror. We turned into a psych ward. Seemed that everyone was screaming, yelling, crying, singing, or basically trying to climb out of bed. We had two ladies who tried to outdo one another with their singing of Ai-Yi-Yi. Don't think either won. Can still here them echoing in my head.
Otherwise looking forward to riding this week again. Do it once or twice each week. Therapuetic for me. Funny, but the horse I ride seems to know that there is something wrong with me. Always giving me hugs which is good for everyone.
The weather is cooler here in NYC but will be passing out brochures for Norman this week who is running as Public Advocate . Cool guy. Cool lawyer. A few of his cases have gone to the Supreme Court. He always WINS. Deals with Civil Rights.
If it was warmer would go to the beach, but just not hot enough. At least no rain. OK, how is everyone else doing?
Still with good and bad days despite DBS, not the answer for a total cure. SHUCKS. Ill-prepared was I.
beka
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Permalink Reply by Elaine on
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I have not posted in a few weeks.
I wanted to say THANKS TO BEKA for her support these past months.
I know that all your volunteering has made a difference to many people.
I had my colonoscopy yesterday. The Gastro said I have Colitis. I have more tests coming with him. It will be a few weeks before I know all the results.
Before the procedure they said my oxygen was low and my bp too. But I have high bp.
I have a HUGE bruise on my arm from them trying to get a proper bp.
I had an "episode" in the operating room. (they do the colonoscopy in an operating room).
I was sedated and kind of out of it. I heard the Gastro say to the nurse that he'd seen episodes like mine before.
He said something like he thought it was a partial seizure in which I remained conscious, and that they'd have to wait it out before they could take me back to my room.
He made some comment to me that he'd wondered if the Neuro had seen these episodes. But I was too out of it to remember if I responded to him.
I think it's good that it happened and hope he'll write it in his final report.
The Gastro is about 15 years older than the Neuro. And seemed to be more informed than the Neuro and that other conditions can cause movements.
Elaine
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Permalink Reply by suej on -
Tired and overwhelmed. This is my 1st week back to school w/ the kids. So far I have spent the week establishing routines and rituals etc. As some of you know I work w/ children that are learning disabled and /or emotionally disturbed. This year we have a group of 9th graders that are particularly challenging. Two weeks ago I was informed by my dr that he is discontinuing his practice here in VA and there aren't to many practioners around familar w/ dystonia. We talked about a couple but he isn't sure they are taking new patients because they are full. So here I sit wondering where to go from here......
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Permalink Reply by freida may on -
Good morning to all i have been up sine 2AM and i cooked a batch of Snickerdoodle cookies. Woke up from a dream and could not go back to sleep. I had a bad night right before i went to bed, i have this strange thing that happens to my feet, they start to hurt and i can not walk on them literrally. My toes do not curl but i did feel some pulling in my left back calf area, First time for that. They usually hurt when i first get up or after sitting or really just any time but those two are the worst. i have talked to my Dr and she just seems to ignore it, Beka have you heard of this or do you know if it could be Dystonia related. I have dystonia in my right leg and sometimes left and my right hand has small unreadable handwriting. Can you shead any light on this subject or can anyone else. Have a good day, i think i might go back to bed. Thanks Freida
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