NeuroTalk Support Groups - This is Weird.

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I have been asked by my HMO to participate in a medical study on more than one occasion. It never said what type of study or whether or not I was going to be paid. It stressed that it was to help further medical science or something like that.

I mentioned this letter to my friend and she said her (deceased) father got a letter like that too. He had the same HMO, so I thought it was just a standard letter.

Thinking nothing of it, I tossed the letters aside.

Then, I get letters -- plural -- saying that I needed to continue the study. It started giving me details in that it was an isotope study. I thought it was sent to me by mistake, because I don't remember participating in any such thing.

So, I ignore them thinking it was a computer printing out a form letter in which the wrong name/address was typed into it.

I kept at least one of the letters, because it was thick. I opened it, saw it had a privacy packet in it, and apparently there was a breach of security.

No biggie. I get those letters every other year from colleges I attended saying there was a breach of security, so I wasn't alarmed.

I decided to keep it in case I needed the to pay for some identity protection.

Today, three years later, I decided to pull out this letter and take another look at it.

As I said, it started to sound like the numerous other letters I get talking about a security breach.

However, as I read more of this letter, it stated that there was a missing flash drive that included the nuclear study that I participated in and information about the isotope product administered to me.

When I asked my friend, how could this even be true? She said they could have easily done something to me while I was under during an endoscopy.

I have been on this board before talking about the numerous tests that I have taken to rule in or rule out MG. That endoscopy was the only test in which I was unconscious.

Then again, I have taken the single stem, and I remember the doctor pointing out to his "intern" that they see "it" and "here it is again."

I was thinking it was something leading to an official MG diagnosis, but after the test results were delivered to my doctor, it was revealed that they didn't see anything.

In order to do that test, my HMO sent me to a medical facility that wasn't part of their facilities. It was UCLA and well respected. I was told that it was due to the fact that there were very few specialists that do that test. Plus, I surf the web, and that seemed to be true. Now, I'm having second thoughts.

Long story short, my HMO states that I do have MG, and I feel I do, even though the definitive test said I did not.

I just wanted to know what is behind these letters. By the way, they stopped coming, but this was going on for three years.

-- At first, the letters were begging me to participate.

--Then, they said they wanted me to come back. (I had stopped going to the doctor after I was feeling hopeless about finding a diagnosis. FYI, my first neuro said I had MG, but I was in denial and wanted a second opinion and opinions I did get... After that journey, I was spent)

--Finally, I get a letter saying that I was part of a nuclear medicine study, and I was administered an isotope product. They apologized about my info getting out, and said they do not know whether the flash drive (with my info) was part of "theft, fraud, lost, or misplaced."

These were on my HMO letterhead, and it said I can file a complaint if I felt I needed to do that. It gave me a copy of my rights, so this all looks official.

Am I overthinking this? Is this just one of the numerous MRIs, CAT scans, and such I've taken over the years?

It said "nuclear medicine study", and I immediately thought cancer, which I don't have. So again, are these letters just sent to me by mistake or just used some medical jargon that could mean a MRI or CAT?

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?

:confused::confused::confused::confused:

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

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, 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

Quote:

Originally Posted by ErinBear (Post 1242229)

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.

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

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.