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View Full Version : MGH or Boston Medical for Vasculitis Center



Middlesista
02-10-2016, 09:21 PM
Trying to determine which vasculitis center to contact. I currently see a RA who has treated GPA before but am thinking I might want to follow up in Boston and was wondering which center folks would recommend between MGH and Boston Medical
.

Thanks

renidrag
02-10-2016, 11:30 PM
Sent a private message.
Dale

Middlesista
02-10-2016, 11:41 PM
Thanks Dale!

WG mom
02-12-2016, 07:16 AM
Dr. Paul Monach at Boston university Vasculitis Center is very well known for his work with GPA. Think I even read he was one of the docs who spearheaded the use of rtx.
If my daughter were still living in Boston, that is who she would consult.

debra
02-12-2016, 07:55 AM
Wg mom, I agree... He's either the best or one of the best... Oh, wow, I wish I never left Boston! You, wouldnt mind, but there's nothing even up here, worth relocating for! Good ol, NH! Deb...

Middlesista
02-12-2016, 08:04 AM
Thanks WG mom and Deb! Dr Stone is another doc that I am considering and he is at MGH. I see my PCP tomorrow and will discuss with him for referral.

WG mom
02-12-2016, 08:09 AM
My best to you in your search. The right doc makes this journey a little more comforting.

debra
02-12-2016, 08:14 AM
Good luck, my sister! Yes Stone is another, and Merkel, though he moved... You're in good hands, nevertheless... Deb...

renidrag
02-12-2016, 08:53 AM
Monach is my doctor at BMC. Very happy with him and staff. Let us know who you see Middlesista.

drz
02-12-2016, 01:16 PM
Who has the first opening? Might be the deciding factor for you?

Middlesista
02-13-2016, 12:01 AM
Who has the first opening? Might be the deciding factor for you?

That is what I was thinking drz - have heard positives about both places. I see my PCP today and he mentioned having aGPA pt that he had sent to Boston but was going to look to see which center he sent them too. My PCP is not overseeing my GPA - I have a RA at another hospital outside of Boston who does have other GPA pts but they do not see the amt of pts that are seen at the Vasculits Centers.

Thanks!

debra
02-13-2016, 04:26 AM
My, sister, good luck, and please let us know who you decide on? You're in a good place, so this should at least bring comfort to you.. Best of luck, and anxious to see who you choose to see... Deb...

Middlesista
02-13-2016, 06:56 AM
PCP thought MGH would be best to contact. I called and they wanted me to fax clinic info in so have contacted RA office, pulm, optomologist and ENT and asked them to fax info over. MGH vasculitis folks told me they would call back once they review. If I do not hear from them in a timely manner will pursue Boston Medical.

thanks everyone!

debra
02-13-2016, 08:49 AM
My sister, I'm anxious to here who you choose and how it goes? I'm originally ffrom Boston, and have read and heard great things about these doctors.... This should comfort you, greatly... Ignore that double f... Good luck, my sister... Deb...

Middlesista
02-13-2016, 09:20 AM
My sister, I'm anxious to here who you choose and how it goes? I'm originally ffrom Boston, and have read and heard great things about these doctors.... This should comfort you, greatly... Ignore that double f... Good luck, my sister... Deb...

Thanks Deb - will let folks know how things work out once they call.

Middlesista
02-25-2016, 11:42 PM
Dr Stone at MGH - could not get in to see him as his focus of interest has changed and he is focusing on another area IGA I think. They have set up an appt with a Dr Eli Miloslavsky and his profile looks promising and I am wondering if anyone is famliar with him?

renidrag
02-26-2016, 07:26 AM
Wish I could help you, don't have any info on this Doctor. Of course it is MGH so I am sure he is good.
Dale

Middlesista
02-26-2016, 08:43 AM
Thanks Dale - was disappointed I could not see Dr Stone. We will see how this goes - I did read that Dr Miloslavsky was involved in the Rituxn trials...

I had had sent some clinic notes and asked the scheduler what else I should bring for records and spectacle me to bring whatever I felt was helpful ... Any suggestions of what should be important to bring?

renidrag
02-26-2016, 09:03 AM
If you have them I would suggest blood tests as far back as possible with Anca tests if they did it. I would think they would order their own bloods, X-ray and possible CT scan. When I went there I had all tests done the same day as the appt. right at the hospital. They also asked me to join a chromosomal genetic trial that was going on at that time and I am sure there is research going on now. Hope all goes well.
Dale

Pete
02-26-2016, 10:54 AM
I had had sent some clinic notes and asked the scheduler what else I should bring for records and spectacle me to bring whatever I felt was helpful ... Any suggestions of what should be important to bring?

If your records are in electronic form, you can sign a release so your new doc can access them.

ohitsacrimebaby
06-25-2016, 01:15 PM
I am a patient at Dartmouth Hitchcock Medical Center in Lebanon, NH. However, Brigham and Womens center for chest disease seems to be my next step for another opinion.