Search results for Cervical dystonia

I know it has to more than just Cervical Dystonia

  • By Jessie3 · Posted January 15, 2008
  • Discussion in Genetic Alliance · 4 replies
  • I was diagnosed with by a neurologist as having Cervical Dystonia& Cervio Genic Headaches. A second opinion called it spasmosic torticolis. Their very similar. Please read as I write my symptoms and see ...

Ruptured disc SEVERE PAIN

  • By cyntwright2u · Posted October 1, 2009
  • Journal entry · 16 replies
  • I suffered a ruptured disc in my lower back in 2004 and lately, I can hardly stand to bend from my waist at all. Pain meds are not really working. Is there an alternative treatment for chronic severe ...


  • By daisybel · Posted April 26, 2010
  • Journal entry · 2 replies
  • I have essential tremor and dystonia. The dystonia is infrequent but very painful when it happens. daisybel So I really feel for anyone who has it too. daisybel ...

Dystonia and Complications

  • By itzykitty · Posted July 13, 2013
  • Discussion in Movement Disorders · 19 replies
  • Hi Everyone! I was diagnosed with dystonia about 10 years ago after 6 years of misdiagnosis. I have ideopathic torsion dystonia, with dyskenesia and chorea. I have been hospitalized many times due to ...

Wilson's Disease

  • By cheesecake · Posted April 24, 2013
  • Journal entry · 10 replies
  • At the age of five I had sharp stomach pain, nausea,etc. I went to doctor after doctor with my mom. They all said the same thing - I was faking it or the flu. Age eight, had heppatitis. Kept having relapses ...

does anybody else have hemi dystonia with your neurosarcoidosis?

  • By beautybarn · Posted August 11, 2009
  • Discussion in Stop Sarcoidosis · 4 replies
  • hi everyone, most of you know i go to the cleveland clinic for neurosarcoidosis. well i was just recently diagnosed with hemi dystonia as well! i have tried to google this with not much luck. could someone ...

i invented a new style neck brace ,cervical dystonia,torticollis,weak neck

  • By shanesbrace · Posted February 16, 2011
  • Journal entry · 0 replies
  • i just joined the group ,i have torticollis also known as cervical dystonia, caused from a serious permanant side effect from a medication called resperadol that i took for over 10 years for mental illness ...


  • By Jessie3 · Posted January 15, 2008
  • Discussion in Genetic Alliance · 1 reply
  • Has anyone out there heard of Wilson's Syndrome? If so, please read the discussion I wrote earlier this morning called, I KNOW IT HAS TO BE MORE THAN CERVICAL DYSTONIA. After I wrote the discussion, somehow ...

Recently diagnosed with Dystonia and doctors are still trying to diagnose..

  • By DMJMMH · Posted November 2, 2012
  • Discussion in Movement Disorders · 5 replies
  • I recently was told my my neurologist that I need to go to the Mayo Clinic or a University teaching hospital so they can try to determine what is going on with me. I have been diagnosed with Dystonia ...

EDS and chronic suboccipital neck pain

  • By starmoon · Posted March 6, 2011
  • Discussion in Ehlers-Danlos National Foundation · 53 replies
  • Hi. I'm 42 years old and was diagnosed with EDS (hypermobile type) when I was about 28. Since I was involved in sports my entire life (most fairly competitively), I often injured myself a lot and just ...

Pelvic prolapse/CI/rectocele/entrocele--surgery??

  • By 1818 · Posted January 13, 2013
  • Discussion in AGMD GI Motility Disorders · 10 replies
  • I had pelvic prolapse surgery 2 yrs ago. I had bladder-ureathra-small bowel and vaginal vault repaired with mesh. I have had severe constipation for at least 20 yrs, I am now 53. 6 mo ago I got diagnosed ...

A positive approach to dystonia and other movement disorders, 2 years later

  • By Fernando14 · Posted February 5, 2010
  • Discussion in Movement Disorders · 0 replies
  • Dear friends in this wonderful forum. Today I really feel fine. Let me please tell you why. As many of you probably know, two years ago I managed the idea of sharing my experience with the world. I think ...

No definitive Diagnosis

  • By Iowa · Posted November 17, 2012
  • Discussion in Wilson Disease Association · 50 replies
  • Hello! My husband is 41 years old and was stricken with a neurological presentation about 5 months ago. He went from being a very healthy, active husband and Dad to almost a non-functioning, lethargic ...


  • By Beckymom · Posted May 23, 2012
  • Discussion in Bones, Joints and Muscles · 3 replies
  • i have cervical dystonia, and i have choose to have dbs witch is brain surgery for my kind of dystonia. there risk, but i will take the risk . if any one out there that has done this please let me know ...

Just had an eye exam showing KeiserFleischer rings

  • By DMJMMH · Posted December 3, 2012
  • Discussion in Wilson Disease Association · 20 replies
  • After going to two different neurologists and being referred to a third with no diagnosis other than dystonia, today I had my eye exam for vision and I asked about Wilson's Disease because I was checked ...

Are there any more options left??

  • By 1818 · Posted January 17, 2014
  • Discussion in iFred Anxiety and Depression · 4 replies
  • I am 54 yrs old and my physical and mental disorders are only intensifying even though I have tried everything to help myself. I went to a therapist about 18 yrs ago and it was very helpful in teaching ...

Acute and Chronic Spasms without much Stiffness - SPS?

marichka (Inactive)
  • By marichka (Inactive) · Posted April 25, 2011
  • Discussion in Genetic Alliance · 3 replies
  • SPS without a lot of stiffness. Is it possible? My wife has undiagnosed neck spasms that started when lying down in bed at night. Over a year and a half, they have become stronger and more pronounced ...

Pain in neck areas, back of head, and headaches

  • By Cheryl0558 · Posted September 21, 2011
  • Discussion in Scleroderma Foundation · 9 replies
  • I started a discussion a while back about my neck stiffness and pain.... this is an update. The pain worstened over short period of time along with horrible headaches, shoulder pain, etc. I was sent for ...

Desperation Setting In

  • By joelee · Posted September 26, 2012
  • Discussion in AGMD GI Motility Disorders · 169 replies
  • I have been thinking of sending this message for weeks; but I have either been too exhausted, too nauseous or too bummed out. And I really hate to be a complainer. But I am a feeling a sense of desperation ...

Paper on Wilson's Disease

  • By Andrie · Posted December 29, 2010
  • Discussion in Wilson Disease Association · 2 replies
  • Wilson disease By Matthew T Lorincz Last reviewed June 24, 2009 Historical note and nomenclature The historical landmark paper in this disease was written in 1912 by Samuel Alexander Kinnier-Wilson, an ...

Meige syndrome

  • By canttalk · Posted August 2, 2013
  • Discussion in Movement Disorders · 15 replies
  • Hi, I am looking for others out there with this diagnosis. It is quite rare. I was diagnosed a year ago. Only one of the symptoms is dystonia. Essentially my brain thinks my body is a bad thing and is ...

Dystonia and E.D.S


Deep Brain Stimulation

  • By ashwest · Posted March 16, 2014
  • Discussion in Wilson Disease Association · 14 replies
  • Hi, I'm wondering if anyone has had deep brain stimulation surgery to treat their neurological symptoms, and if so what were the results ...

Symptoms after eating

  • By gail-61 · Posted December 4, 2012
  • Discussion in Wilson Disease Association · 8 replies
  • Can anyone tell me if they experience symptoms after eating? We were out for sushi yesterday and today I have extreme join pain and heart 'issues'. Has anyone else experienced this and if so, how long ...

Methylation Genes - MTHFR C677T and A1298C

  • By martiz · Posted September 2, 2012
  • Journal entry · 74 replies

Intrathecal baclofen pump

  • By toughlove · Posted February 23, 2014
  • Discussion in Cerebral Palsy · 7 replies
  • Hi, Just wondering who else out there has a child with an intrathecal baclofen pump? Our son has had one for 3 years and we have had difficulties with numerous side effects. We had to reduce the dose ...

1st note from Peace Lady, asking about Prolia

  • By peacelady · Posted April 29, 2011
  • Journal entry · 34 replies
  • Well, here I am. Peace Lady. But dont feel too peaceful right at this moment. Firstly i have extremely advanced osteoporosis of the spine , with four small fractures from when i was 18 . A lot of this ...

Acute and chronic Neck spasms without terrible stiffness or pain

marichka (Inactive)
  • By marichka (Inactive) · Posted April 25, 2011
  • Discussion in Movement Disorders · 0 replies
  • I wrote the message below to a psychiatrist I have some history with, but I'm posting it here as well. Excuse the length, but this is a strange, undiagnosed case. We're specifically seeking some expertise ...

Using google to keep updated on movement disorder posting

kinoini (Inactive)
  • By kinoini (Inactive) · Posted August 16, 2012
  • Discussion in Movement Disorders · 4 replies
  • Rather than searching google on a regular basis for updates on you condition, you can use to set-up an automatic emailing regarding updated links for your subject of choice ...

Extreme back and neck.pain

  • By chronicpain47 · Posted August 28, 2013
  • Discussion in Genetic Alliance · 20 replies
  • Hello..I'm.a 48 yr old female from NJ.. I been suffering horrible neck and middle back pain with awful spasms..I have severe osteoarthritis in right shoulder. My lower back feels like a 10 lb bag of potatoes ...

Not sure if symptoms fit

  • By gail-61 · Posted November 5, 2012
  • Discussion in Wilson Disease Association · 29 replies
  • I am wondering how long people have symptoms before they are diagnosed? I have been having neurological problems for over a year. Eye drooping, difuculty walking, tremors. They seem to come and go and ...

Experience taking Linzess 290mcg

  • By 1818 · Posted July 13, 2013
  • Discussion in AGMD GI Motility Disorders · 91 replies
  • I have been taking Linzess for about a month now. Have CI and have had severe constipation of about 18 yrs. As I am sure many of you have tried different things and they work for a short time and then ...

i am unable to speak clearly due to wilson's disease

  • By cns00 · Posted August 10, 2013
  • Discussion in Wilson Disease Association · 5 replies
  • hi all, i have a problem i need help with. i am now 33 years old. i lost the ability to speak clearly when i was diagnosed with wilson's disease when i was 21. i was given a high dose of d-penicillamine ...

Remission!? Hahaha!

  • By Kaye2u · Posted August 12, 2011
  • Journal entry · 17 replies
  • Anyone have your Dr tell you your in "remission" but, still suffering with symptoms? I had a smile a mile wide leaving Dr's office after being told the swelling in my lymph nodes had gone down- (with ...

Graves Disease

  • By Miracles-Happen · Posted May 5, 2010
  • Journal entry · 14 replies
  • Treated with RAI..... REGRET! I came down with Fibromyalgia soon after. Constant Vit. D deficiency now, now Hypo Thyroid, stabilization problems can be a big problem from time to time. WEIGHT GAIN! ICK ...

New interesting VISUAL tool in the physiotherapeutic advice area (II)

  • By Fernando14 · Posted October 8, 2009
  • Discussion in Movement Disorders · 0 replies
  • Dear friends. A month ago I introduced you a new option to get helped and learn in the physiotherapeutic area, now more intuitive than ever, at the url: [no banners, no ads ...

VISUAL tool in the physiotherapeutic advice area.

  • By Fernando14 · Posted May 4, 2010
  • Discussion in Movement Disorders · 0 replies
  • Dear friends. Many of you know closely the distoweb’s option to get helped and learn in the physiotherapeutic area. Many of you have taken into account every good advice for your concrete symptoms (spasms ...

Any one diagnosed with both MS and Scleroderma?

  • By hjr · Posted February 23, 2012
  • Discussion in Scleroderma Foundation · 28 replies
  • I was diagnosed with MS in 2009, sjorgrens, rynard's and arthritis. Then in Oct. 2010, I was also diagnosed with Systemic Scleroderma. Ok, so Scleroderma is a rare disease, but apparently, having both ...

What do I keep doing to my neck?

  • By BrilliantBlue · Posted December 23, 2013
  • Discussion in Ehlers-Danlos National Foundation · 12 replies
  • I tend to get awful neck spasms, a lot of neck pain, and the like. Today I woke up and my neck really hurts (sharp pain) when I bend it certain ways. Why does this keep happening to me and is it EDS-related ...

Pain in neck and head

  • By blueink · Posted September 2, 2012
  • Discussion in Ehlers-Danlos National Foundation · 34 replies
  • I have hypermobility ehlers and vascular Ehlers. I also have the worst ever POTS, have had numerous heart ablation surgeries and multiple heart diseases. I have a really strange question to ask. Ok, here ...

Sometimes we make mistakes

  • By Brian · Posted May 23, 2008
  • Journal entry · 34 replies
  • Two months ago, when we launched Inspire 2.0, we added a group called 'Team Inspire'. We did this with the best intentions: we wanted the group to be a space for new members to get oriented, ask questions ...

chronic pain is like water on a stone

  • By rubyrose · Posted August 2, 2008
  • Journal entry · 11 replies
  • Hi everyone my name is Ruby Rose I live in Co. Wicklow. Ireland. I was diagnosed with this condition 5 years ago after a fall that broke my wrist. My wrist healed but the pain has continued on and on ...

Stiff neck pain?

  • By jnic87 · Posted February 19, 2011
  • Discussion in Scleroderma Foundation · 25 replies
  • Lately I have been experiencing difficulty turning my neck from left to right, and when if I hold it in a certain position, it begins to hurt. This has been going on for over a month now and I was just ...

"Bell's Palsy of the Gut" and other GI Manifestations of Lyme

  • By Lymerick · Posted July 8, 2013
  • Discussion in AGMD GI Motility Disorders · 4 replies
  • This sounds like what has been plaguing me for most of my life - how about you?? Lymerick "Bell's Palsy of the Gut" and other GI Manifestations of Lyme and Associated Diseases Virginia T. Sherr, M.D ...

Seeking co-pay assistance for Botox injections for spasticit

  • By plummer_jan · Posted April 2, 2007
  • Journal entry · 3 replies
  • Hello, I am looking for alrenative sources of financial assistance for Botox procedures and the medication, especially co-pay and co-insurance assistance. I can not afford the secondary payment that Medicare ...

Auto Immune

  • By Jessie3 · Posted January 27, 2008
  • Journal entry · 4 replies
  • My husband was given (welcomed) advice by his sister the other night, "tell Jessie, she might want to look into the auto immune aspect of her symptoms." and I asked him tonight - what does this mean ...


  • By jolenegs · Posted October 10, 2009
  • Journal entry · 9 replies
  • Hi! I was just wondering if many others are taking Reglan. I've been taking it for about 1 1/2 years right now. I've seen the black box warning and talked to my rheum. about it and she doesn't want to ...


  • By laddybug · Posted October 30, 2009
  • Journal entry · 16 replies
  • Just received the results of my gastric emptying test. The doctor said I have "markedly delayed emptying" she called it gastroparasis. She wants to put me on reglan for two weeks in addition to a low ...

The Healthiest Sick person I know

  • By Nihao · Posted November 4, 2009
  • Journal entry · 6 replies
  • I not only look healthy, but appear that way on paper, too. I have perfect cholesterol, blood pressure, blood sugar, weight etc... Majority of my symptoms are neurological... all of my MRI tests, CT scans ...


  • By onlychele · Posted February 6, 2011
  • Journal entry · 2 replies
  • Newly diagnosed Polymyositis, diagnosed like two weeks ago or so. Last week started Cytoxan, 50 mg twice a day. I've been so sick (nausea and vomiting) I'm wondering what others experiences are with Cytoxan ...

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