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critical situation and questions


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Hello, forgive me as I am still very new here. I joined to help a friend and have since been going through a nightmare with him and the MSA he has. My friend had come down with pnuemonia and was admitted into the hospital. all seemed to be going well and after 4 days he was about to be released to go home. on Monday night he begged me to come and stay at the hospital he had a bad feeling something was about to happen. I decided to spend the night and now I am glad I did. after he was given his meds, IV antibiotics, Iv Steroids which he had been recieving all along while there and ativan to control the violent tremors from the albuterol in the nebulizer treatments he was hooked up to the ipap machine for the sleep apnea. all seemed fine until around 3 am when I was awaked by his loud breathing and thrashing around in the bed. he ripped the ipap mask off and he was obviously in distress. the nurses continued to come in every hour or so and I would ask what was going on they replied this was normal for him. at 6 am he became highly agitated and began to have even more violent tremors and he catapulted out of the bed to the floor where he seemed to be having seizures (HE HAD BEEN UNCONCIOUS ALL THE WHILE). the hospital staff was useless and they just kept giving him more and more IV drugs ativan and then haldol all awhile he became worse eventually he coded and they intubated him. he has been in a coma since. he came to with another violent episode after the initial 24 hours and went back into the coma. he has been in the ccu since the first episode and now I am told he had a history of being psychotic and the meds they gave him may have brought on the seizures. I dont understand any of the things that are happening and wondered if anyone here could shed some light on this. My friend is also a member here though I am not sure he had posted in along time. his name is Brian Markey from shrewsbury mass. Please if you are friends of his, know him or have any info that may help me understand this situation please email me either on the group or off list at brenzi@AOL.COM right now I am waiting word on weather they had enplugged the life support equipment or have a prognosis. thank you

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Anemone, I am sorry no one has responded to you. It is probably because your post is appearing under the "Information" section and not the "general discussion" section where we look most frequently. I don't know how to suggest getting your topic moved without retyping in the appropriate spot.

Nevertheless, I just want to say that I am so sorry for your friend. It is terrible what is happening to him. I don't know him from the forum but perhaps he posts with a different name as many do. I wish I knew something to offer but I am not familiar with his situation. He was obviously aware that something wasn't right within his body to have the foresight to ask for you to come and stay for support. How frightening for the both of you.

I will say a prayer that the doctors are able to help him. You are a very good friend to him.

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Sorry to hear about your friend... that's a very tough situation. Yes, I've actually witnessed someone with POTS having seizures (we were called down to her room during the NDRF conf in 2002 to help her roommate care for her).

Unfortunately, MSA has a poor prognosis. http://www.ninds.nih.gov/disorders/msa/msa.htm

from the NINDS site:

What is Multiple System Atrophy?

Multiple system atrophy (MSA) refers to three slowly progressive related disorders that affect the central and autonomic nervous systems. The disorders are characterized by their foremost symptoms: olivopontocerebellar atrophy (OPCA), which primarily affects balance, coordination, and speech; a parkinsonian form (striatonigral degeneration), which can resemble Parkinson's disease because of slow movement and stiff muscles; and a form with predominant autonomic nervous system involvement (formerly Shy-Drager syndrome, now called MSA with orthostatic hypotension). In all three forms of MSA, the patient can have orthostatic, or postural, hypotension-an excessive drop in blood pressure when the patient stands up, which causes dizziness or momentary blackouts. Other symptoms may include stiffness and rigidity, loss of balance and coordination, impaired speech, breathing and swallowing difficulties, blurred vision, male impotence, constipation, and urinary difficulties. Most patients develop dementia late in the course of the disease, which is usually diagnosed in persons over age 50. MSA is twice as common in men as in women.

Is there any treatment?

There is no specific treatment for nerve degeneration in MSA. Levodopa, used to treat rigidity and tremor in Parkinson's disease, may offer some help. However, striatonigral degeneration does not respond well to levodopa. Dopamine and anticholinergic drugs may be prescribed to treat spasms. Orthostatic hypotension may be treated with flucortisone and other drugs that raise blood pressure. Increased dietary fiber intake or use of laxatives may relieve constipation, and drugs or a penile implant may help with male impotence. A routine of stretching and exercise can help retain muscle strength and range of movement. An artificial feeding tube or breathing tube may be surgically inserted for management of swallowing and breathing difficulties.

What is the prognosis?

MSA is a slowly progressive disorder. Some patients may have a normal life expectancy.

What research is being done?

The NINDS carries out and funds studies of basal ganglia and cerebellar degeneration and autonomic nerve system dysfunction, including multiple system atrophy. This research is aimed at obtaining a better understanding of these diseases and finding ways to treat, cure, and ultimately, prevent them.

I hope your friend gets through this crisis and improves enough to have a good quality of life.


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Guest tearose

I'm keeping you guys in my prayers...

I hope he will come out of the coma very soon.

I hope you have been able to get support and a caring knowledgeable doctor.

Care takers must make time to nurture themselves, don't let yourself get over extended or you will risk getting run down and sick too.

sending well wishes, tearose

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