My husband has recently been diagnosed with Dysautonomia. Anyone ever heard of it?

Question

My husband used to be a very robust, intelligent man. While he is still extremely intelligent, he is almost bedridden, has an unbelieveable amount of excessive sweating from head to toe, entire body itches, has rashes that have broken out over head, face and down back of neck. He is unable to walk more than 20 ft or less before being unable to continue and must sit down in a wheelchair. He had chronic aches and pains accompanied by muscle cramps throughout his upper and lower extremities. When excessively tired, is unable to speak and has difficulty knowing what to do such as sitting down. I have had to pat on the bed and tell him several times he needs to sit down before it registers. The doctor says it is a problem with the autonomic nervous system not sending complete communication messages from the brain, to the heart, and to other muscles. We are hoping to get him on IVIG thereapy soon. Would love to hear from others that may have this disorder. We live on prayers and faith

Answer 1

A young woman I know, has just before Christmas was diagnosed with a disease related to Dysautonomia, but is still being tested, to get a clearer picture of what is going on.

I seriously know very little about this condition, except that Greg from the wiggles (yellow) was diagnosed with a related condition to Dysautonomia, Postural Orthostatic Tachycardia Syndrome (POTS), forcing him to retire from the wiggles.

What is Dysautonomia?
Postural Orthostatic Tachycardia Syndrome (POTS) , Neurocardiogenic Syncope, Mitral Valve Prolapse Dysautonomia, Pure Autonomic Failure, Multiple System Atrophy (Shy-Drager Syndrome) are some of the many disorders that involve a dysfunction of the autonomic nervous system, or Dysautonomia.
Our bodies have a complex task of maintaining a stable internal environment and respond appropriately to changes that take place in the external surroundings. This complex task is directed by the Autonomic Nervous System.

The autonomic nervous system manages most of our bodily systems, including the cardiovascular system, gastrointestinal, urinary and bowel functions, temperature regulation, reproduction and our metabolic and endocrine systems. Additionally, this system is responsible for our reaction to stress - the flight or fight response.
When our autonomic nervous system malfunctions, it is known as Dysautonomia. Other terminology that is used includes - Autonomic Dysfunction, Autonomic Failure and Autonomic Neuropathy.
For those afflicted with Dysautonomia, there is a range of symptoms that can vary. The prognosis may be one that calls for an abatement of symptoms, or an adjustment to living with a chronic impairment. The following statement, by Dr. David H.P. Streeten, provides an excellent summation of the impact of Dysautonomia:

While we are not constantly aware of the activity of the autonomic nervous system as we are of unusual sensory and motor events, the normal functioning of the autonomic nervous system day and night, from heart-beat to heart-beat, plays a largely unconscious but vital role in our livelihood. It is not surprising, therefore, that autonomic abnormalities, though they are usually more difficult to recognise than a severe pain, a sensory loss or paralysis of a limb, may be even more important in impairing the quality and even jeopardising the continuation of life.

Autonomic Disorders are classified into two divisions
Primary Disorders (e.g. Orthostatic Intolerance Conditions, MSA /Shy-Drager Syndromes)
Secondary, or Acquired Disorders (e.g. Diabetes Mellitus)

I have included a few links, and I hope things improve for your husband. And the therapy helps relieve some of his symptoms, especially the pain.

Take care and good luck

Answer 2

We'll See Our Mary Again "Marking the entrance to the valley of the Great Salt Lake and standing as a sentinel pointing the way, is located "This Is the Place" monument. Here is featured Brigham Young—his back turned to the privations, hardships, and struggles of the long desert way, his outstretched arm pointing to the valley of precious promise. . . ."That first trek of 1847, organized and led by Brigham Young, is described by historians as one of the great epics of United States history. Mormon pioneers by the hundreds suffered and died from disease, exposure, or starvation. There were some who, lacking wagons and teams, literally walked the 1,300 miles across the plains and through the mountains, pushing and pulling handcarts. In these groups, one in six perished."For many, the journey didn't begin at Nauvoo, Kirtland, Far West, or New York, but rather in distant England, Scotland, Scandinavia, or Germany. . . ."Between the safety of home and the promise of Zion stood the angry and treacherous waters of the mighty Atlantic. Who can recount the fear that gripped the human heart during those perilous crossings? Prompted by the silent whisperings of the Spirit, sustained by a simple yet abiding faith, they trusted in God and set sail on their journey. Europe was behind, America ahead."On board one of those overcrowded and creaking vessels of yesteryear were my great-grandparents, their tiny family, and a few meager possessions. The waves were high, the voyage long, the quarters cramped. Tiny Mary had always been frail, but now with the passage of each day, her anxious mother saw the little one becoming weaker. She had a serious illness. There was no neighborhood drugstore, no doctor's prescription, no modern hospital—just the steady roll of the tired old ship. Day after day worried parents watched for land, but there was none. Soon, Mary could not stand. Lips that were too weak to speak trembled with silent but eloquently expressed wonderment and fear. The end drew near. Little Mary peacefully passed beyond this veil of tears."As family and friends crowded around on the open deck, the ship's captain directed the service; and that precious, ever-so-small body, placed tenderly in a tear-stained canvas, was committed to the angry sea. Her strong father, in emotion-choked tones, comforted her grieving mother, repeating, ' "The Lord gave, and the Lord hath taken away; blessed be the name of the Lord." (Job 1:21.) We'll see our Mary again!' " Thomas S. Monson, "Come, Follow Me," Ensign, July 1988, 2, 4 Topics: Sacrifice, Testimony

Answer 3

Sorry hun never heard of it, check this out. God bless you and have a safe happy new year

Answer 4

Try this website. It has some information that you may need.

http://www.dinet.org/

Also try http://www.ndrf.org/ and
http://ndrf.org/eve

My Prayers are with you.

Answer 5

i dont kno anyone who had this disorder (disease?) but ive heard a good bit about it. its a tough thing to deal with but it is able to b delt with. i wish you all the best of luck with your journey!

Answer 6

In the computer there is a Encyclopedias they might be able to help you out in a way.Good luck to you.