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Imove
- 53, Female
- Chattanooga, TN
- United States
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Imove's Discussions
Questions, questions
Started Sep 6
Neuropathy not Dystonia
Replied Jun 21
Connie's page
Latest Activity
Thanks!
Beka, please chime in on these questions too...your knowledge base is much appreciated and respected.
My local neuro (a new one) thinks my CD of twisting motions look like dystonia. My recent visit to the neuromuscular disease specialist at UAB th...
Hi Pattimay,
My abdominal muscles do spasm and contract but it doesn't happen during sleep, it happens during the day, and for me it does hurt. What does wake me up are terribly painful spasms in my toes, ankles & legs that twist my toes and feet ...
Have you tried using www.Dystonia-ResearchFoundation.org (then go to the Support tab) which has listings of neuromuscular specialists listed by state? I found that to be very helpful. I, like many others, have been on the same merry-go-round as yo...
It's good to hear from you - I'm glad you wrote.
When the symptoms first started, it was spasms in my toes and feet only, plus they weren't as severe as they are now, there was no twisting, and not as frequent either...like every 3 months or so. O...
Hi Connie,
My onset, meaning full blown cervical dystonia was quick but it was actually slow coming on. For many years I had a slight what the doctors called " a slight congenital head tilt" for many years. Although I never had any pain and myself...
Mine was a slow progression also. It took 14 years to get a point of disability, and since that point has been increasing more rapidly the past 2 years (In my late 20's) I believe my doctor also believes that because it was slow at first that I ha...
I apologizes Connie, just now ran across your message. I sleep ok once I get to sleep. My husband says it sounds like a bear chasing him in the bed at night with my snoring....I was never a snorer before...ok, it was few and far between.
What wer...
Comment Wall (17 comments)
- At 7:20pm on May 8, 2009,
ween said… - Hi Connie just checkin in to how u were doin
- At 6:09pm on April 2, 2009,
ween said…
- alright Connie, how was your appt. yesterday? any answers? More tests? My cough is finally winding down, thank God!
The bad things is I have no energy at all....its such a strange feeling to not be able to move when u want to do stuff. I cant get my feet to move its so awful...but it could always be worse! My youngest son has been staying at the house which really helps cuz my best friend / care taker works most the time. She has a page on here to I could not of gone threw this with out her, shes one of a kind. Ill try and send the link or u can look her up. Her name is Marci Jackson.
Well im gonna rest, Ill be checkin in for your update talk to yea soon, Tina
- At 2:33am on March 30, 2009,
ween said…
- hi Connie i was thinking of u to..funny how that is. How havee u been doing? Any good news? Ive actually been really sick lately, got a cold about 2 weeks ago and finally after a 102 temp my roomate took me to the er, i was having an attack2. they knocked my out as usual, but sent me home with nothing. so i went to my regular dr. and she gave me a heavy dose of antibodics and told me I had broncitis. Plus I have been having attacks at least twice aday. I just cant recoperate...my body is so tired and sore. Oh and she finally gave me an antidepressant...Yeah. I have been so depressed. Its been almost unbearable and thats not like me. well, thats my scoop. hows your luck with the Drs. any good news? tina
- At 3:53am on March 5, 2009,
ween said…
- Hi Connie, howd ur appt. go with the specialist? i hope you got some good news, I refuse to go to any specialist, it cost to much and they wont try anything different. so im just gonna keep going to my internist, Shes really good. I went to a meeting of the Chapter for Dystonia, it was interesting, everybody in there was older than me and all had cervical dystonia. They said they are way beyond the attacks and r just in pain most of the time. Know my friend that i live with and takes care of me had alot of info for them. Once again nobody knows anyone like me, thats ok I like being one of a kind....They are trying me out on birth control to mellow out my hormones cuz it seems near my cycle I have more and stronger attacks, also Klonipin, to sleep. My body is starting to show signs of the twisting in my hands now. they dont want to work right, well let me know how you are doing.
- At 4:38am on January 26, 2009,
ween said…
- Hi Connie, How are you doing? I just wanted to tell I was approved for S.S. Disability my first time applying. Yeah, Now Iam legally disabled. What a thought to never work again. I can now apply for Medi-cal since im disabled and hopefully get some kind of insurance. My visit to Stanford cost $801 to see the Doctor for 45 mins. That is just absolutely rediculous what they charge. Anyway, just checkn how you were, Tina
- At 5:22am on January 15, 2009,
ween said…
- Hi Connie, it is odd i had been wondering how u were. I doing ok i have to make an appt. with a psych. that specializes in movement disorders. Other than that Im one of a kind and he had never seen anyone like me. Thats scarey since he is a highly recommended movement specialist. After that Others come on with now warning. Everyday is different,,I was checking out the different videos of peoples attacks it crazy to see people with the same problems I feel so alone sometimes,,for someone to feel the pain that I go through and how hard it is to get through the day sometimes. I cant wait for the next chapter meeting and actually meet peole like me. well i better get some sleep
- At 3:49am on January 14, 2009,
ween said…
- Just wanted 2 say Hi and see how u are doing.
- At 2:26am on December 29, 2008,
ween said…
- Hi Connie, thanks for the support! It seems the more I read alot of people are having the same problems. Easy out blame it on stress. Everyone has stress and they all dont have distonia. It is very depressing to go from dr. to dr. and get nowhere!
Im just praying that my ssd. gets moving its in the review phase which they said it can take 6 to 8 weeks to get processed. Its crazy when you work most of your life and when you need help it takes so long. My state disability runs out in march then I no income at all. Im so worred about money and being able to continue paying for my meds. Plus my ssd. is half of what i get know and you have to wait 2 years for their medical to kick in. No wonder people get depressed.. well they say God only gives you what u can handle, but sometimes we forget that.
Im glad the holidays were good for you. Mine was so so...trying to get my kids all in one place is difficult since they have their own lives now. Well its late Ill talk to you soon.
- At 4:58pm on December 28, 2008,
ween said…
- Hi Connie, well I made to Stanford. After the tyipical nuero. exam the dr. proceeded to tell me that Iam not tyipical dystonia that he has never seen anyone like me. which really threw me for a loop. They also filmed me for research purposes. Hes not sure if what I have is even dystonia. He is the 5th neurologist Ive seen and is not sure what I have, a little disappointing. Everyone else has said Dystonia. He thinks stress is the big factor. He wants me to see their psychologist. Also would like me to get the gyn. testing done. Plus scans of my abdomen and pelvis area to rule out any cancer. All I know is that I tired of it, the doctor visits, paying for all this stuff and nobody knows how to give me any relief. I mean it makes sense stress is a big factor everything that happens when ur sick is stressful. Im just over it I want to give it back to where it came from. On to something better, How was your holidays?
- At 11:05pm on December 25, 2008,
Jen said… - Hi Connie, please see my notes below. I will be heading to Boston for evaluation for mitochondrial disease in January. I will let you know how it goes. I think that there are more and more of us with dystonia and GI dysmotility that my have mito. I hope you are enjoying the holiday season. Best, Jen
Profile Information
- In the online health communities I participate in, I'm:
- a Mom/Mr. Mom (I’m here for you)
- More about me (my health interests and reasons for joining WEGO Health)
- RN, married, two grandsons - ages 16 months and 10 months. My passion is gardening. I had a brain tumor removed 9yrs ago, celiac artery bypass (Nov 08), severe small bowel dysmotility, fibromyalgia, and intermittent gastroparesis, so I understand a lot about the different facets of chronic illness. I was on Baclofen - it didnt help. I have 2 short videos on this site of some of my spasms and twisting.
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