Anyone with experience waiting to get to NIH

[Jody]

Hello everyone!

I have a quick question. I have been waiting for over a year to get to go to NIH. I was notified in January of this year that I had been accepted into their orthostatic intolerance protocal. Naturally, I was very, very excited as my doctor referred me there for evaluation.

But, I heard nothing else from them. I finally emailed them and asked if I was still in the study. They did answer that yes the study was underway and yes I was still included but they just couldn't get me scheduled before the end of this year.

I have read many of your posts and you mention participating in these studies, but you never mention how long it took you to get to that point.

My doctor doesn't want to do anything more with me until I'm seen. So, I'm in this horrible holding pattern.

Any advice or past experiences on how long it takes and what to expect?

I'm a little frustrated at this point. I really thought they would keep in better contact with me.

Thanks in advance!

Jody

[MightyMouse]

I think your doctor is taking to wrong approach if he's going to wait for NIH. It could be a year or more until you get into their facility. I waited a year the first time. I got accepted to the same study that you did and it's been a year and half. They can only take one or two patients a week. Also, they were awaiting the arrival of new equiptment.

Nina

[MomtoGiuliana]

Hi Jody

What does your doctor expect to learn from NIH? Most of us have not been evaluated by NIH, yet are being treated.

Katherine

[corina]

Hi Jodie,

Is it possible to ask your doctor to start treatment? I think I wouldn't wait for so long and nothing being done at the same time. That must be very hard on you. Maybe you can talk this over with your doc.

Good luck,

Corina

[briarrose]

I've was also accepted almost a year ago to that study and I talked to the NIH recently. There booked until February right now, doing another study. Nina I was told that they could only do 1-2 patients a month; are we talking about the same study? I agree with Nina that your doctor needs to treat you in the now and not later.

steph

[Guest tearose]

There is a difference between participating in a research study and getting to a place for complete diagnosis. Just be sure you know what you want and you know what you are getting. Personally, I think going through an intense personalized diagnostic plan is going to be a good way to get an understanding of what is happening now, with all the current understanding. You can always do the NIH study in addition, in case they are finding out new trends that is "cutting edge" information. The NIH study may be self limiting depending on the goals of that particular researcher. best regards, tearose

[Eillyre]

Hi Jody!

I'm (almost) in the same boat! I've only been waiting for 4 1/2 months to get into NIH -- I even told them I would be willing to just go for a 4-6 hour consultation since I had been told about the waiting list. I had seen an electrophysiologist at UPenn (with limited experience in POTS, but some nevertheless) who diagnosed me with POTS, so we went ahead with treatment knowing that it would be a while before I could be seen at NIH. Unfortunately, I had really bad reactions to midodrine, florinef no longer really makes a difference, etc, etc...so I'm back to waiting for new ideas.

I haven't been impressed with communication at NIH -- the doctor's secretary that I've been in contact with has been very nice, but I feel like it's pulling teeth to get any time estimates. I'm told that I'll definately be called in two weeks to let me know when the doctor will see me, but of course, three weeks later I have to call myself and try to get hold of someone ...you know the drill, I imagine.

I've just started taking steps to get into Mayo in MN -- probably another long wait, but maybe shorter than NIH. At this point, I have to see someone to get some new ideas for treatment -- nothing else is working. I would say definately start treatment now, because there's no telling how long NIH will take. If you find something that works while you wait for the study, hey, enjoy feeling healthier again during that time. If you can't, at least it's useful information for the doctors at NIH to know.

Sorry that you're having such a frustrating time with all this -- hope we can all be seen soon!

With love and a hug,

Angela

[blackbirdsings]

I think getting into NIH depends on what studies they are doing and what your problem is etc. I got into NIH the first time I went in less than a month. I don't think that happens all the time. Just keep trying to get in and check in with them every so often. As for diagnose...NIH was the first to really diagnose me but there are still things they haven't figured out. The regular doctors are clueless and ask me what to do. Real lovely.

[Jody]

Thanks everyone for your input. I have been through several different kinds of meds. My doctor, after exhausting yet another idea/med, feels his hands are tied and would like the additional testing, ideas and experience that an autonomic lab could offer me. He has tried almost everything and really is awesome. He handles colds and such for me even though he is a cardiologist. He still knows more about what a cold, flu, etc. can do to a person with POTS. He reads a lot, but knows when he needs to ask for help.

The initial evaluation tests for this study would be enough to at least give us a better idea of where I am at autonomically.

He sent the information for me to be seen by them as a consultation, but I was put into this study instead. In the long run I am hoping that it will be of a greater benefit. Not just to me, but to the whole autonomic community.

Ellyre your story sounds very much like mine.

It is nice to hear from the rest of you who have also been waiting so long to get into NIH. At least now I know that this is the norm.

[goldicedance]

I agree with Nina. I got the same explanation for the delay in the orthostatic intolerance testing and measurement--they are waiting for equipment.

I would suggest that your doctor draft a detailed letter detailing your condition and then send it to Dr. Low./Sandroni at the Mayo. If you would like, I can get to you a copy of the letter my cardiologist wrote to the Mayo several years ago. It worked--but perhaps it was because my cardio knew Dr. Low from various ANS meetings.

Has your doctor tried you on Mestinon? Perhaps he/she could call the Mayo docs and ask them about that. Another drug being used in WV is Octreotide.

Just some thoughts. Keep hanging in there but at the same time don't let your doctor wait for further evaluation.

If you really wanted a consultation with the NIH expert, you can arrange for a private consultation (off hours, no insurance). I didn't think that NIH took people off the street for a consultation unless they were going to be part of a formal study.

Goldie

[katsusu]

Hi,

I have been to NIH twice. The reason for the delay is that besides all the new people they take in, they also do retest a year or so later. When I was there last year the secretary showed me the files. They try to get the people that are worst off in first. Also, they might be trying to finish a study- (they have several studies going at once). You also have to think of the time that the head doctor or part of his staff is gone on vacation, out sick, conference or whatever. The reason they can only take 2 patients a week is- they only have the PET scan machine slots 2x per week. The scan is a big part of their study.

You do get better understanding from your tests, but they only make suggestions on the treatment.

It does take time, and the test can be hard but i think it is worth while to wait and go through with it.

Kathleen

[Eillyre]

Thanks for the info Kathleen! I didn't know about the re-testing. I wish they had explained the process to me a little more in depth. Glad you found your visits helpful!

Angela

[Gena]

Just curious what is NIH? I 've seen it posted before on the board, but never took time to find out what it is and where it's located?

Also, Kathleen mentioned a PET scan? What type of scan is this and how is it helpful in a diagnosis? Thanks!

[Jody]

goldicedance, you mentioned two drugs that I had not heard of before. What does the Mestinon do? I'm thinking we are going for a side effect of the drug as it's original purpose is for Myasthenia Gravis.

And I think I've figured out why they are trying the Octreotide. It has antihypotensive properties and I also noticed that it can reduce heart rate, which would be a plus for me. My only concern is that it is in the injectable form only.

Have you or anyone else tried these? I'm wondering about side effects. It seems lately if the meds do work, the side effects just about do me in.

Thanks again to everyone for all of your help!

[Jersey Girl]

Hi Jody,

I was also told after my initial evaluation at NIH this past January that I would be returning for the week long study in 6-12 months. I also called to see what had happend and was told that I was still in the study but that the study only would accomodate 2 patients per month due the availability of the pet scanner. I am also anxious to go because I feel I am in a holding pattern as well. Take care, Martha

[briarrose]

Gena

The NIH is the National Institute of Health in Bethesda, Maryland

What is Positron Emission Tomography?

Positron emission tomography, also called PET imaging or a PET scan, is a diagnostic examination that involves the acquisition of physiologic images based on the detection of positrons. Positrons are tiny particles emitted from a radioactive substance administered to the patient. The subsequent views of the human body developed by this technique are used to evaluate a variety of diseases.

http://www.radiologyinfo.com/content/petomography.htm

[katsusu]

hi,

I will try to explain some of what they do at NIHwithout getting you mixed up.

They deal with alot of autonomic dysfunction besides POTS- as orthostatic hypotension and Parkinsons Disease, muliple system dsytrophy, other orthostatic intolerance, and quite a few other things that i have no idea how to spell their names. What they do is give you a bunch of test and take your blood while your doing the test then measure the propties of the blood at that time. An example is taking your blood at different stages of a tilt test. Standing and lying at different times. They might inject you with a certain chemical to see how your blood propities will react- will they follow the normal way-the POTS way- or will it go another direction. I find the test done with the basic evaluations to be the most interesting- during and finding out the results. But one piece of caution i would like to give you- is the staff and doctors are very nice there, but alot of the information and results can be slightly over your head. But still learn as muchas you can -ask question when you can- they are more then willing to answer- especially if your waiting for the elevator or something- because they may not have time to sit down and give you much time after. Also usually-if like me- i was over whelmed and on over load from all the input. Also, the test do effect the POTS and tired me out.

As far as the PET scan- they are long -

They look at it to see what the chemicals are doing in your body. For me - they were looking to see what the sympathic nerves in my body/heart were doing. But that is because I also have Parkinson's Disease.

I enjoyed my time there, but it was not all fun and games-some of those test are difficult and hard on POTS. The people are great. I did learn more about POTS, but my questions were not all answers because there is some that could not be answered. But the best part -is the respect that yougot from the staff-and they made you feel like you mattered.

If you want to know more about the test -i will write more about them.

Kathleen

[Jody]

Kathleen,

Thanks so much for your words of encouragement. It has helped to firm up my belief that being seen at NIH is very much worth the wait...

Thanks!

[katsusu]

Jody,

Yes - i think it is worth while, but i would not hold up treatment or learning and understanding- basically i would not put my life on hold. But i would start listing things i want to ask- learn about the work they are doing so you can understand what they are talking about -when they answer the questions. They do not mean to give you complex answers but it is just a complex subject. SO, i keep learning and understanding -while you wait. i felt that the secondtime i was much more an active player instead of a person stunned by bright lights.

Kathleen

[Jaime]

I have POTS and ehlers danlos and have seen Dr. Grubb. Should NIH be something for me to consider going through?? I guess I don't really understand if this is something to do with initial diagnosis, treatment, or research into new treatments? Sorry if this seems like a repetitive question.

Jaime

[katsusu]

If you have seen Dr. Grubb and you know what you have and you have a treatment plan-- then there is no real need to see NIH upset if you want to understand how these things can effect you. NIH is a research hospital - to learn more about the diseases. if they can give you a treatment suggestion then they will but otherwise it is to learn more about out bodies. But if there is alot of question still unanswered-or maybe question that are not asked -i would try to go there- But it is not the easiest place to go to. But they might find your case interesting. What is your other condition?

I hope this helps

Kathleen

[Ernie]

As suggested by the others I would not wait to get in NIH to try new treatments. NIH is great, the employees take good care of us but a year is a long time to get appropriate medication. This was my best medical experience of my life. I would go back anytime.

Ernie