Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.


advertisement
Reply
 
Thread Tools Display Modes
Old 05-03-2017, 03:30 AM #1
Poetist Poetist is offline
Member
 
Join Date: Aug 2010
Posts: 109
10 yr Member
Poetist Poetist is offline
Member
 
Join Date: Aug 2010
Posts: 109
10 yr Member
Default

Okay, as I stumbled upon more info from the web <<side eye>>

I noticed that a nuclear study is or could be imaging testing, and the isotope product could be something they gave me that was radioactive. Once or twice, I had dye w/contrast. Is that the isotope?

This still doesn't explain the initial letters asking me to participate in (an unknown) study to help further science.

Or could those letters be form letters?

Poetist is offline   Reply With QuoteReply With Quote
Old 05-03-2017, 08:54 AM #2
ErinBear ErinBear is offline
Member
 
Join Date: Jul 2014
Location: California
Posts: 162
8 yr Member
ErinBear ErinBear is offline
Member
 
Join Date: Jul 2014
Location: California
Posts: 162
8 yr Member
Default

Hi Poetist,

I can't answer all of these questions. I might be able to answer some.

I have participated in clinical trials and research studies. Sometimes they are paid. Sometimes they are not. Most of the studies I participated in were not paid. I was happy to participate, knowing that I might help medical science. Since the studies were related to health issues I had, I hoped I might help towards better treatments for people suffering from those same health issues. Sometimes I learned things that also were helpful to me during the studies, and I received additional medical care in the process most of the time.

Maybe it is possible that the product you received was the contrast used in the procedure, although it seems like they would have told you first if they were trying a different product than usual. Usually they use contrast containing iodine, which shows up on imaging but is nontoxic. I think they would have to get your approval before the procedure if they were going to administer a different form of contrast. I suppose you would need to contact the hospital if you have additional questions. I'm sorry about the potential loss of medical information, too. That sort of thing is worrisome. I hope it is just misplaced, and will turn up soon.

Take care,
Erin
ErinBear is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
AnnieB3 (05-08-2017)
Old 05-04-2017, 01:40 AM #3
Poetist Poetist is offline
Member
 
Join Date: Aug 2010
Posts: 109
10 yr Member
Poetist Poetist is offline
Member
 
Join Date: Aug 2010
Posts: 109
10 yr Member
Default



Okay, I found more of the letters, and the letters seem to be two different studies.

One says that I had an interest in the Research Program on Genes, Environment, and Health. I never entered my name in a such a study.

Then, there is a packet to move forward with the study.

The other paper says that "the flash drive . . . included the name of the nuclear medicine study in which you participated, and information about the isotope product administered to you."

In some ways the last one sounds like it was a CTscan or MRI because it says the "flash drive did not include the results of your test... diagnosis, prognosis, or other clinical information."

The words: clinical information, study, participated, and "information about the isotope product administered to you -- makes it seem as if I was in some study that used some type of experimental product.

If they had used the words administered, received, I would think I was given a dye to do a test.

Poetist is offline   Reply With QuoteReply With Quote
Old 05-04-2017, 12:37 PM #4
ErinBear ErinBear is offline
Member
 
Join Date: Jul 2014
Location: California
Posts: 162
8 yr Member
ErinBear ErinBear is offline
Member
 
Join Date: Jul 2014
Location: California
Posts: 162
8 yr Member
Default

Poetist, does the letter give you contact information? If so, you could call or write them if you have further questions. That might be a good idea.

Take care,
Erin
ErinBear is offline   Reply With QuoteReply With Quote
Old 05-05-2017, 05:24 AM #5
Poetist Poetist is offline
Member
 
Join Date: Aug 2010
Posts: 109
10 yr Member
Poetist Poetist is offline
Member
 
Join Date: Aug 2010
Posts: 109
10 yr Member
Default

Quote:
Originally Posted by ErinBear View Post
Poetist, does the letter give you contact information? If so, you could call or write them if you have further questions. That might be a good idea.

Take care,
Erin

Yeah, I'll see the doctor twice next week, so I'll ask then.
Poetist is offline   Reply With QuoteReply With Quote
Old 05-08-2017, 07:44 PM #6
AnnieB3 AnnieB3 is offline
Grand Magnate
 
Join Date: Feb 2009
Posts: 3,306
15 yr Member
AnnieB3 AnnieB3 is offline
Grand Magnate
 
Join Date: Feb 2009
Posts: 3,306
15 yr Member
Smile

You have the right to know what exactly they did to you, and if it was with your permission or not. Also, they may be doing this extensive "study" in an attempt to cover themselves legally.

If this is an elaborate scam, someone went to a lot of trouble to create it!

There should be a phone number on the paperwork you received. Call that number. Your doctor may not know a thing about it.

Whatever is going on, you deserve to know what they are talking about. When was the isotope in question administered? How much? Only once? There are a lot of questions you should ask them.

I hope you can get to the bottom of all of this!

Annie
AnnieB3 is offline   Reply With QuoteReply With Quote
Old 06-01-2017, 03:07 AM #7
Poetist Poetist is offline
Member
 
Join Date: Aug 2010
Posts: 109
10 yr Member
Poetist Poetist is offline
Member
 
Join Date: Aug 2010
Posts: 109
10 yr Member
Default

Sorry to come back so late with an update, but I talked to the only doctor that I trust, my primary physician.

She said the Isotopes (product) were the dyes used in the MRIs and numerous nuclear tests that I have taken. They include the MRI, CAT, and a few others.

When it came down to the medical study, my doctor said not to trust it. It's been three years, and they've stopped trying to illicit my participation. My doctor thinks that one is a scam, even though it was a very elaborate one. I'm talking about w/very expensive packaging, thick booklets, and glossy postcards with the HMO's logo.

She said the flash drive theft was true, but since my credit is good, I'm good.

Thanks all for your input in the matter.
Poetist is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
AnnieB3 (06-03-2017)
Reply

Tags
hmo, letter, letters, study, test


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Weird urge to suddenly sleep, weird effects when I do. (Also hi y'all!) EddysHead Traumatic Brain Injury and Post Concussion Syndrome 0 10-25-2012 03:10 PM
This is so weird...I'm not sure what to do with myself. Erin524 The Stumble Inn 7 08-01-2008 12:19 PM
Do I fit here or am i just weird? bobcatsrule Multiple Sclerosis 13 03-10-2008 11:20 AM
MY PC is WEIRD~ DM Computers and Technology 8 02-20-2008 09:57 AM
Is this weird or not? Megan Peripheral Neuropathy 15 10-19-2007 03:44 PM


All times are GMT -5. The time now is 10:04 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.