Re: How Do You Cope

[Guest guest]

R, If they know the drug that did it, can't you and others who have suffered the

same, sue the company that makes it?

If only they could block the action that starts this in the brain. Have you

been studied at a teaching hospital in their neurological department? Is there

a name for this kind of brain injury?

I hope you have more good days than bad. I do understand over stimulation of

the senses and what panic is. But that doesn't compare to what is happening to

you.

It almost sounds like a kind of seizure with the muscles being tight.

Jennette

>R wrote:

>I have a unique pain condition. I was given a drug that I was allergic to and

it

caused brain damage. This has resulted in body wide muscle pain, severe

insomnia, terror (worse than anxiety), lots of neurological symptoms, agitation

and so much more.

My muscles are so tight I am always injuring something.

>The problem is that medications don't help and many have made it way worse, way

worse. My last doctor (after many) told me I was lost to the medical community

and to try to learn to live with it.

>I do know what horrible physical pain is from a severe auto accident I was in

years ago - so I know where many here are at. At least with that I did not have

the mental torture.

>This has been going on almost 5 years with no let up. I only sleep 2 to 4 hours

then the torture begins. It is so bad I cant leave the house except to walk.

Have not been to a store or anywhere for over 4 years. When I go out the

over stimulation to the brain makes me insane and the body pain worse.

>I know how bad many of you are - how do you cope when it never ends and never

improves. I have a wonderful wife and I don't want to die but most days I do.

[Guest guest]

While my reaction was severe there are millions of people in severe pain from

drugs. The Floroquinolone antibiotics are totally ruining some people lives - I

have a friend who took four doses and has been totally crippled and tortured for

over 3 years. She was a high functioning high school principle and two weeks

later in bed and has not been out in years.

People by the millions are on powerful psychiatric drugs that once they stop,

can have years of disabling symptoms. As long as the drugs are used as

prescribed, there is nothing you can do.

I have had my case reviewed by top neurologists at 5 teaching hospitals

including the Mayo and Scripts. There is nothing they can do so I suffer, have

no life and pray.

Rix

Jennette wrote:

> R, If they know the drug that did it, can't you and others who have suffered

the same, sue the company that makes it?

[Guest guest]

>> R wrote:

>> I have a unique pain condition. I was given a drug that I was allergic to and

it caused brain damage. This has resulted in body side muscle pain, severe

insomnia, terror (worse than anxiety), lots of neurological symptoms, agitation

and so much more.

>

> My muscles are so tight I am always injuring something.

All,

Read up on s Disorder which describes drug reaction and if you

have done this once, you need to have a small amount of a medication injection

under your skin to see if you are allergic to it and always keep epinephrine in

the house which is an antidote to a dug reaction.

I would see and allergist to have this documented and in your nurses notes and

if you do not do this, there is no chance of compensation.

If you took a medication that you had paid for with an medical insert and you

refused consultation, you are to blame.

We all have to find the correct form of physician, correct plan of treatment for

what we have and that takes many tries and not giving up.

First off, if you had an reaction, who administered the medication, what was it,

and what evaluation did they do.

If it were me, I would get a work up with an allergist so he could do extensive

testing to see what items you react to and both of you develop a plan.

http://www.mayoclinic.com/health/stevens-johnson-syndrome

While you are having testing, a pain management doctor should be treating you

for you pain until you find out what you have and the tightening of the muscles

could be neurological.

National Institute of Neurological Disorders and Stroke and National

Organization for Rare Disorders (NORD) Good Luck Bennie

P.O. Box 1968

(55 Kenosia Avenue)

Danbury, CT 06813-1968

orphan@...

http://www.rarediseases.org

Tel: Voice Mail 800-999-NORD (6673)

Fax: