Neuroendocrine Clinical Research Unit at Mass General

Therapeutic Efforts Doctors & Therapists
#1

I wanted to start a new thread so that everyone could see this. Credits to Woah for informing us of this clinic. Everyone here should call and say you want to see a neuroendocrinologist. When they ask you why, explain your symptoms and say you took finasteride.

I called Friday morning and explained my symptoms. The person I spoke with was confused, until I told him I took finasteride. When I told him I took finasteride, he said thats all he needed to know. Apparently, quite a few PFS people have gone to the clinic and now they are interested in launching an investigation. The man I spoke with over the phone said the doctors at the clinic are very interested in our problem. They want me to send all tests (blood, EMG, MRI, etc.) and they have a neuroendocrinologist who is starting to examine our cases. They are very aware of PFS and they are interested in the problem. I live on the west coast and cannot go until March, but I encourage everyone on the east coast to contact them immediately. This will further promote research and awareness into our problem.

#2

Pls post the contact info.

#3

Neuroendocrine Research

Bulfinch Building
55 Fruit Street
BUL 457B
Boston, MA 02114
Phone: 617-726-3870
Fax: 617-726-5072
Hours: 9:00 am - 5:00 pm, weekdays

#4

Has anyone else signed up for mass general? Or is everyone going to take the sit on my ass, do nothing, donate nothing, and let others try to figure it out approach?

#5

I am going to call tomorrow.

#6

I plan on calling this week. Is there anyone in particular to ask for or to speak with?

Thanks for posting this information.

#7

I don’t know if I should post her name on this forum, but if you call and explain you are suffering from finasteride side effects, they will most likely refer you to the same neuroendocrinologist that woah and I were referred to. They will ask you to send all medical tests you have had done. It’ll be great to get that neurosteroid research paper out so we can send that too.

#8

So I called the number provided in dgreene’s Jan 13 post above. I was told this number was given in error and that this division focuses strictly on endo related to the pituitary. In addition, they said a number of men have been calling them with Fin related issues/concerns (perhaps due to this board). However, they refered me to Mass General’s Reproductive Endocronolgy division because there is a Dr. there that is taking these type of cases. The number they gave me to the “Repro Endo” unit is:

617-726-3038

www2.massgeneral.org/reproendo/p … _staff.htm

I was unable to stay on the line, but I plan to call back early next week. I’ll post the outcome of my call.

#9

Please disregard my last post on this topic (above). I called both numbers and no one knows anything about a study or anything related to PFS apparently. If anything, they sounded pissed that I was calling them at these numbers.

My apologies for any misinformation.

Maybe dgreene or whoa can provide a clarification.

#10

haha, well at least they have hear of PFS now!

I am seeing a doctor over at reproductive endo early next month and will let you know how it goes. Neuroendocrinology asked me to see the specialists at reproductive endocrinology first, though they admitted that I may very well end up back with them. Looking at the researcher specialties, repro-endo may be the better fit, at least initially.

My impression is that neither center had heard of PFS (but were willing to see me and look into it) and asked me to send along some info and all the usual test results. I’m not expecting anything, but one never knows, and they assured me that they see the hard to solve cases. Both my GP and the local endocrinologist are certainly on board on me seeing them there, mostly because they have no idea on what to do with a case beyond their usual protocols.

Anecdotally, I’d say that the patient coordinator at reproductive endocrinology was much less helpful than the guy I spoke with at neuroendo. I’d say hold off on the phone calls for a month or so if possible.

#11

I met with reproductive endocrinology at Mass Gen today. They are indeed aware of PFS (the positive thing) and there was no need to convince them that the condition is real/ propeica didnt also make me insane. However, they were not aware of what to do about it, or have any insight on how to treat it. Sadly, nor was there an interest (where’s the $?) in finding out what the roots of the issue are.

There is, however, another research group in the Boston area that may be starting a research protocol on the underlying causes of PFS (hypothesis= epigenetics) in the near future. Will update as I know more.