Scheduled an appointment with a neuroendo at Mass Gen

Therapeutic Efforts Doctors & Therapists
#1

I just scheduled an appointment with a neuroendocrinologist with the Neuroendocrine Clinical Research Unit at Mass General hospital in Boston, MA. Among other things, they advertise taking on the hard to define or identify cases and seem to think they are among the best in the world, let’s see. They also specialize in research and developing novel solutions. It’s not clear to me however whether or not they have any experience with PFS. I had to discuss it briefly over the phone with a couple of people, the last of which sounded confused, put me on hold briefly to confer quickly with some of the doctors, then came back to promptly signed me up. Maybe word is out?

They also told me it wouldn’t hurt to send them a few materials on the issue if I wanted to, my health journal, and a full range of test results.

Which leads me to this question. If you’re going to a neuroendocrinology unit…

  1. What would you ask?
  2. How would you sum up the running theories as to the cause the crash, the persistent symptoms, and recovery?
  3. Anything else that I should say or ask?

Remember, these guys claim that they solve problems, not just order tests and prescribe insulin dosages or thyroid pills… they claim…

Thanks, in advance.

#2

Review the main site pfsfoundation.org (particulary published and upcoming research sections) and bring copies of the published studies by Traish, Irwig etc.

Review the FINASTERIDE STUDIES section of propeciahelp.com, do a search for “depression”, “allopregnanolone” and “THDOC” in that subforum if you want studies highlighted about neurosteroids… ie:

viewtopic.php?f=8&t=38
viewtopic.php?f=8&t=202
viewtopic.php?f=8&t=5168
download/file.php?id=206
deepdyve.com/lp/de-gruyter/t … Jbzcf4qy0X

#3

Bring your iPhone or gPhone or whatnot with the Dr Crisler 60 second video of him speaking at the convention ready to press play.

Doctors believe Doctors 1st.

Bring them Hard Copies of the important few studies to leave behind.

Write a dated as much as possible timeline/chronology of your history/symptoms to leave with them.

#4

Crisler is a cowboy…

I really don’t think your going to get much out of it other than testing your hormonal levels… Just monitor them for a couple of months they will either improve or not…

#5

I encourage everyone here to do the same and make an appointment. If at least a dozen people come with the same problem, from having taken the same medication, and do not responds to the regular treatments for hypogonadism, they will take us all more seriously and possibly launch an investigation into the issue. Think of this as another way to gain awareness among the best of the medical community. Imagine if we had awor’s new study and the studies in Europe complemented by researchers at Mass General. I will be calling them tomorrow to schedule an appointment.

Propeciashiz: if you have in fact recovered from hcg, consider yourself very lucky, and very rare among us.

#6

Tell them Finasteride reduces the neurosteroids Allopreganolone and THDOC as a side effect. show them this image

770×537

and ask them if they can research better into this.
PS where did this image came from the first time?

#7

Thanks for the ideas, please keep them coming. I want to be as prepared as possible, and be able to make a convincing case. Shouldn’t be hard, right?

Mew, I promise I will be fluent in all the resources listed by the time my appointment rolls around.

Tab, thanks for the table, this type of stuff is right up my alley. Greene, please let me know if you book something at Mass Gen. And in any case, I really agree with you on this, that at some point the system needs to start to acknowledge the issue, which is only going to happen when more doctors start seeing multiple cases. One case to a doctor is an anomaly, two is perhaps a coincidence, and a half-dozen becomes a pattern. Anyway, my thinking is that big research initiatives and awards that range in the millions come through the NIH and are directed to research centers and hospitals. An average fund for start-up research for a new medical research professor at my university is often in the million dollar range. To get that money, awareness (and interest) needs to increase, especially by doctors at some of these clinical research centers.

PropShiz, maybe this will be a waste of time and I just get retested on occasion for hormone levels, but we will see. Can’t hurt to try to put the case to a place like this. The doctor’s that I’ve been seen by so far I would put in the class of not really being knowledge creators, but rather reactors to what they are told from the “higher ups.” Sort of like being able to repair a car, but not really knowing or understanding the underlying engineering or structure of the machine. And maybe the doctors I’ve come across just don’t have the time (and I’d say the creativity or know-how) to grapple with an out of the textbook case. To put it in the text book, you’ve got to reach the authors. Anyway, certainly can’t hurt.

#8

Ok I found the study from which that image came from. Here it is, bring it to them.
pmr.cuni.cz/Data/Files/PragueMed … 9a0025.pdf

#9

also this!

ncbi.nlm.nih.gov/pubmed/23280249

#10

Yes whoaa, let them know we are suffering from the effects of estrogen dominance. Dry skin, digestive problems, cycling symptoms of depression, sexual dysfunction, non-allergic rhinitis, cycling Eustachian tube dysfunction, low thyroid symptoms of freezing cold hands and cold body temp.

Please show them the studies that demonstrate the protective effects of progesterone are destroyed by finasteride…specifically that the administering of finasteride completely ABOliSHED the protective affect of cells pretreated with progesterone

Please please please!

1 Like
#11

Also, in terms of improvement, I would ask why some people seem to slowly get better ( what does that indicate?) Ask why some have improved with progesterone use as well as dopamine boosting agent s such as Deprenyl

#12

I am compiling a number of things which I will send to the clinic. I will include this paper. As much as we may think we know whats going on here, we don’t. We need professionals to investigate our problem and let them make conclusions based on their findings. I hope you are all going to schedule an appointment with them. This is very important for us in terms of getting more people in the scientific community involved. If you are in the boston region, I don’t see why you shouldn’t go soon. The more people they see affected with PFS, the better.

#13

Also tell them many members who tried a neurological diagnosis for the pelvic area, obtained it as pudendal/peripheral neuropathy. Review this thread
viewtopic.php?f=27&t=5661&hilit=neuropathy

The fact that most members can raise testosterone without feeling much down there, makes somewhat the pair with those diagnosis and can indoubtly point to the possibility that the principal cause might be neurological. Otherwise it’s androgen insensitivity I suppose, but for neurological disorders apparently there is some good pool of positive diagnosis.

#14

Thanks everyone. Just sent over an information packet to Mass Gen. I have an appointment in February and will let you all know if anything comes of this. For what its worth, I’ll be seeing physicians at their reproductive endocrinology department.

#15

Good luck and keep us posted!

#16

Dgreene-
I got your pm, but don’t seem to have the option to reply by pm, only email (?), which I guess you didn’t receive. But yes, that is the doc I am seeing. I will let you know what they have to say, if anything.

#17

Met today with a doctor at the reproductive endo unit as Mass Gen.

The good news: The doctors seemed very competent and ARE INDEED quite aware of post-finasteride symptoms (a nice little victory in itself). It was nice to explain what happened to a top flight doctor at a clinical research facility and have them have some pre-existing knowledge about PFS.

The bad news: They have no idea what to do about it or why it occurs. It’s not their focus, and they recognized that we are just in our infancy in terms of understanding the condition. We ordered more tests to keep on top of things, and I may go back if symptoms persist after another few months. However…

I was put into contact recently with a group at another one of the research hospitals in Boston that is in the process of starting a research protocol into PFS. I will pursue with this other group in the near future and update accordingly.