Remember Me     Forgot Login?   Sign up   •  Web site Help & Info

!!! DISCUSSION GROUP RULES !!!

1. You must be a registered website user in order to post and comment. Guests may read only.
2. Be kind and helpful, not rude and cynical.
3. Don't advertise or promote anything. You will be banned from the group.
4. Report problems to the moderators. THANK YOU!

You helped "educate" my hematologist!

More
13 years 9 months ago #20746 by mungie99
You helped "educate" my hematologist! was created by mungie99
I am very grateful for your November e-newsletter, PDSA. I had previously asked my hematologist about a problem I had experienced with nearly fainting a couple of times, as well as "brain fog" issues similar to those who have lupus (since I have not had a definitive diagnosis of lupus as yet from my rheumatologist). On those two occasions, my very sweet and knowledgeable Doctor said there was no connection between those episodes and my ITP. When your November e-newsletter reported on research that shows that "ITP Patients have More Problems with Memory and Fainting than Others", I brought the article to him at my next visit. Being the wonderful and caring person he is, he stated "You educated me." He quickly checked his computer for the up-to-date hematology news that he subscribes to and found that this research had not yet been passed along to them. (He was grateful to receive it and passed it along to his colleagues in the office.) Thanks so much for always passing along the latest research, and for your blogs which are full of information for us.
More
13 years 9 months ago #20748 by eklein
Replied by eklein on topic You helped "educate" my hematologist!
Who is this treasure of a doctor and is he accepting new patients? :)
Erica

And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K
More
13 years 9 months ago #20749 by mungie99
Replied by mungie99 on topic You helped "educate" my hematologist!
Hi, Erica...His name is Sean Mullaly and his office is located in Florence, Mass (a suburb of Northampton, MA). Any Doctor who is willing to admit he doesn't know everything is wonderful in my book.
More
13 years 9 months ago #20750 by eklein
Replied by eklein on topic You helped "educate" my hematologist!
Yes, the fact that he admitted he learned something from a patient was very impressive. It seems a lot of them see 'the internet' as just a mass of nonsense that their patients bother them with - unwilling to believe we are capable of sifting through and finding good information.
Erica

And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K
More
13 years 9 months ago #20753 by mungie99
Replied by mungie99 on topic You helped "educate" my hematologist!
You are so right, Erica. I have been very, very lucky with both my primary care Doctor and my hematologist. Now my rheumatologist is another story.
  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
13 years 9 months ago #20761 by Sandi
Replied by Sandi on topic You helped "educate" my hematologist!
I've had some bad Rheumatologists also. I've found that if you at least have one who monitors you and helps manage symptoms prior to a diagnosis, he's worth keeping.

I also had a lot of extreme dizziness and near fainting when my counts were really low (under 8). I thought it might have been job stress at the time, but it only happened whenever counts were way down.
More
13 years 9 months ago #20792 by Dean
Awesome!!!! Personally I feel ITP has affected my memory.
More
13 years 9 months ago #20793 by mungie99
Replied by mungie99 on topic Re: You helped "educate" my hematologist!
Hi, Sandi (Love reading your posts, by the way). Unfortunately, the rheumatologist isn't interested in "monitoring". I guess I'm just to call him if I have any problems. He gives the impression he's much too busy to see me unless I have a "serious" problem.
I find it interesting that you say the fainting spells happened when your counts were very low. The research the article referred to said (I think) that it didn't depend on what patients' counts were. I think if it happens to me again that I will ask for a CBC stat.
And Dean, the foggy memory I have may (or may not) be connected to my ITP. I just turned the dreaded 65 (used my Medicare card for the first time the other day. Ugh). However, my primary care said that he doesn't believe that my age is related to the problem.
More
13 years 9 months ago #20795 by eklein
Replied by eklein on topic Re: You helped "educate" my hematologist!
I've had a little dizzyness when my counts were dropping - I think it is the active disease process that is causing them to drop that caused the dizzyness rather than the low count itself. I once was sitting on an exercise bench during a personal trainer session and I was talking and leaned over and just kept tipping and fell off the bench - the trainer was a little freaked out.
Erica

And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K
  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
13 years 9 months ago #20812 by Sandi
Replied by Sandi on topic Re: You helped "educate" my hematologist!
Mung:

Well then, I don't consider him worth keeping (Rheumatologist). Is there anyone else you could see?

I have dizziness now with higher counts, but I think that is related to Lupus/medications/sinus pressure/unstable blood pressure/possible TIA's/stress....who knows? I have other issues and wouldn't blame ITP for that at this point. The low count dizziness was different anyway.
More
13 years 9 months ago #20828 by mungie99
Replied by mungie99 on topic Re: You helped "educate" my hematologist!
You know, Sandi, you're right. It never occurred to me to see another because the one I see was the rheumatologist that both my primary care and hema referred me to, and I always value their opinion. However, they know him as a colleague, not as his patient, so their relationship with him is totally different. Next visit I will ask for a different referral. Thanks for pointing out the obvious. This is why I love this website.
  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
13 years 9 months ago #20842 by Sandi
Replied by Sandi on topic Re: You helped "educate" my hematologist!
I have had 5 Rheumatologists in the past 7 years (long story). Only three of them were good. The other two blew me off and it turned out that I actually did need one. Keep trying.