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Nih In Maryland...anyone Been? Experiences???


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Hi All,

No energy left, so this will be quick.

Saw a great Hematologist today, about the last specialist I haven't seen.

He's perplexed as well. He thinks my best shot after Phoenix next week will probably be to travel to the National Institute of Health for full evaluation there, as they are the only place that won't worry about my insurance.

That's a very long way from New Mexico.

Anybody have experiences there??? How do they work it there....inpatient, or clinics like Mayo, OR....


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Usually you get in through a study they are doing. What kind of study does your hematologist think you could get in on? Orthostatic? A blood disorder?

If they need to do any kind of stimulation testing or testing that spans hours or they need you in a certain condition to begin testing, you will most likely be in patient. This is all based on what I've read other patients do(non-POTS related). If it is just for a genetic test or a scan, I believe they do it out-patient.

I have thought that IF Mayo doesn't come up with anything regarding my low blood sugar that I would apply to NIH to go for their hypoglycemia studies.

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Hi Sue,

Well he said it would be submitted as entire work-up evaluation. Possibly in the Metabolic/Endocrine/Neuro group.

I tried to look at their website a little last night and it's all very confusing. The only thing helpful I found was the group for rare diseases. But it says they stopped accepting new cases last July. So I'm really not sure how they do things there, it all looks seperate like you are saying, and you have to be a trial.

The Hematologist said they could do the whole case just like Mayo or Cleveland does, the difference being that NIH won't look at insurance. Then after they figure things out they ask to use the info for research and possibly ask for more testing done for some of the trials.

So I'm really not sure what would happen or how. Just hoping Phoenix can figure this out next week, or at least partially.

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Definitely keep me updated on what all happens with NIH. Like I said, I'll try the hypoglycemia thing, but I really have alot of endocrine things in the picture. If it so happens that an endocrine group takes you in and then places you in a study, I'd love to know that.

Yea, I'm still hoping on Mayo myself, with my repeat visit in April. They sent me paperwork yesterday to sign saying they could use my information for research, so I'm not sure if they'll throw me in a clinical trial when I get back or what. I had already signed a million papers on my first visit, so I can't imagine that this paper is routine. Maybe it is and they just forgot.

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Sure thing Sue, I will keep you updated.

If the NIH thing happens at all I'm going to try for fall. We've had enough trips recently...well Phoenix next week. Will probably be going back to Phoenix in summer for some invasive tests. Hate to go in summer, but at least the hotels will be more reasonable and we can hide inside.

I remembered one of the things the Hemo said was that I really need genetic testing, all my Docs have said that. We only have a pediatric geneticist here, who I've seen on a consult.

Apparantly any genetic testing is pretty much impossible to get covered by any insurance.

He also said he suspects Polymyositis, that's a new one that nobody has said to me yet.

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