1. < Caregivers

Veteran Friend has Tremors and Stutters

Posted by 1013leigh @1013leigh, Jul 1, 2019

My friend Is 50yrs old and was in the gulf war in 1991. Exposed to several chemicals and came home with Epstein Barr virus, "Levels were 500." Medical notes say he was to sick to keep and to stick to discharge. Suddenly claimed he was healthy but discharged him. He's been sick ever since. He started taking effexor along with adderall and gabapentin and was taking a multi supplement from Amway. He had a tick last yr. not sure what kind. He's also been exposed to rats. 5 months earlier started effexor, already was on adderall and gabapentin! Two months earlier started the supplements. Suddenly he has tremors started in his head and intermittent stutterring, body sometimes tremors not just one side, said sometimes his feet feel stuck, excessive urinating sometimes blood pressure is high, said he feels hot often. He has diverticulitis also. He had a brain MRI and an EEG at the VA And blood and urine tests at a private ER. They are pretty much letting him die. His feet don't shuffle and sometimes if he has a drink he stops stuttering. I noticed if he's under any pressure or stress it gets worse. What tests could be done

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Ethan McConkey, Moderator | @ethanmcconkey | Jul 1, 2019

Hi @1013leigh and welcome to Connect. That must be awful watching your friend go through this.

I wanted to share a few discussions you may find interesting and helpful.

Epstein Barr - https://connect.mayoclinic.org/discussion/is-chronic-reactivated-epstein-barr-virus-different-from-chronicle-ac/

Effexor withdrawal (although your friend is currently taking this medication, the discussion may provide some insight on other people's experience with it) - https://connect.mayoclinic.org/discussion/tips-on-minimising-withdrawal-symptoms-from-effexor-aka-venlafaxine/

Diverticulitis - https://connect.mayoclinic.org/discussion/diverticulitis-1/

How are you handling all of this? How involved are you in their care?

REPLY
1013leigh | @1013leigh | Jul 1, 2019

I am able to talk to the Doctors but the VA isn't doing much. I thought he should be hospitalized if it's seritonin syndrome. I am working with a VA advocate but I think he should be having series of tests done. Today he saw a counselor but this is much more than anything psychological I who'll look at your links thank you.

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Jul 2, 2019
In reply to @1013leigh "I am able to talk to the Doctors but the VA isn't doing much. I thought..." + (show)
@1013leigh

I am able to talk to the Doctors but the VA isn't doing much. I thought he should be hospitalized if it's seritonin syndrome. I am working with a VA advocate but I think he should be having series of tests done. Today he saw a counselor but this is much more than anything psychological I who'll look at your links thank you.

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@1013leigh Hello and welcome to Connect. I’ve read your post about your friend who is sick. Did your friend give permission for you to talk with doctors? Like, did he name you as his medical power of attorney? With this permission, doctors can legally discuss your friend and all that going on with him. It’s very easy to get.
Does he see a neurologist? Has the VA tested him for all the chemicals and metals found in the air during the Gulf War?
I admire you for sticking by your friend in this difficult time

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1013leigh | @1013leigh | Jul 3, 2019

That is the problem I am having the VA is not what I thought it was. But now that I am able to speak to them I at least have an appointment. The lady I talked to at the VA said, "that's not the VA way to do expensive tests"

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rmftucker | @rmftucker | Jul 3, 2019

Don't sell VA short. My husband had wonderful care from them for over 30 years and they still provide many of his meds even though he is unable to physically attend an appointment with their Drs. The people at our local VA clinic were always kind and helpful and knew people by name. If it was an emergency situation, they got us right in or was able to give me the equipment or meds needed to alleviate the problem. Their social worked guided me through the difficult time of obtaining a site for an mental evaluation locally when we knew I could no longer care for my husband of 64 years at home. They are busy but they care.

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1 reply
1013leigh | @1013leigh | Jul 3, 2019
In reply to @rmftucker "Don't sell VA short. My husband had wonderful care from them for over 30 years and..." + (show)
@rmftucker

Don't sell VA short. My husband had wonderful care from them for over 30 years and they still provide many of his meds even though he is unable to physically attend an appointment with their Drs. The people at our local VA clinic were always kind and helpful and knew people by name. If it was an emergency situation, they got us right in or was able to give me the equipment or meds needed to alleviate the problem. Their social worked guided me through the difficult time of obtaining a site for an mental evaluation locally when we knew I could no longer care for my husband of 64 years at home. They are busy but they care.

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Every one is kind but my friend is only 50 and very sick I had good luck when I had to take him to the ER there but prescribing someone needs that shouldn't be taken together is upsetting. And the months to see the dr. In his condition is also dangerous. The lady I talked to just is poor at customer service and I am not a demanding person. Never calling me back wasn't good. They said they don't want to do any expensive tests.

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1 reply
Mentor
Ginger, Volunteer Mentor | @gingerw | Jul 4, 2019
In reply to @1013leigh "Every one is kind but my friend is only 50 and very sick I had good..." + (show)
@1013leigh

Every one is kind but my friend is only 50 and very sick I had good luck when I had to take him to the ER there but prescribing someone needs that shouldn't be taken together is upsetting. And the months to see the dr. In his condition is also dangerous. The lady I talked to just is poor at customer service and I am not a demanding person. Never calling me back wasn't good. They said they don't want to do any expensive tests.

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@1013leigh I have been on the road, and this afternoon was thinking about your situation. Does your friend have a veteran's group he belongs to, that has advocates? What about contacting your local city council or supervisor, rattling some cages to let them know a veteran is being pushed to the side? If you have a recording, or in writing, about the comment of not doing expensive tests, tell the VA they are leaving you no choice but to go to the media [TV or paper]. Be the squeaky wheel. Hope this helps.
Ginger

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1 reply
1013leigh | @1013leigh | Jul 5, 2019
In reply to @gingerw "@1013leigh I have been on the road, and this afternoon was thinking about your situation. Does..." + (show)
@gingerw

@1013leigh I have been on the road, and this afternoon was thinking about your situation. Does your friend have a veteran's group he belongs to, that has advocates? What about contacting your local city council or supervisor, rattling some cages to let them know a veteran is being pushed to the side? If you have a recording, or in writing, about the comment of not doing expensive tests, tell the VA they are leaving you no choice but to go to the media [TV or paper]. Be the squeaky wheel. Hope this helps.
Ginger

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He's not in a group he's just not feeling well enough for that. I am starting to do just what you said. It must be helping because I received an unusual call from the VA. They are making sure everything is going well.

REPLY
rmftucker | @rmftucker | Jul 5, 2019

Contact your US senators. They are able to expedite requests. They need to know what is happening in VA.

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