I know the moderators are trying to pull together a list of physicians, and in the meantime maybe we can help by adding names to this list.
Joseph L. Jorizzo USA
Offices in New York, NY, and Winston Salem, NC
After 25 years of visiting countless physicians, it was a wonderful relief when Dr. Jorrizzo picked up my foot and started explaining what he saw. I had been diagnosed earlier this year by a rheumatologist who said there was nothing to be done for me, but Dr. Jorrizzo has a protocol. I had been following Dr. Cohen’s list (http://medicationsense.com/index.php), so the first four or five things Dr. Jorrizzo suggested were things I had already tried. So he prescribed something he said no one else is using, but he has been using with some success for decades. It’s a very low dose of trifluoperazine, an antipsychotic (1 mg). I haven’t noticed any effects from it, positive or negative.
I have another appointment in three months, so I will see what other tricks he has in his bag. But it is an amazing relief to finally be under the care of a doctor who knows what this is!
I see Dr mease in Seattle WA. He is with Swedish Rheumatology. He is aware of EM but not an expert. I know he has 2 or 3 other patients with EM. He and his nurse practitioner Lynn Shafer are great with trying all of the more common treatments as well as new things I discover here that have helped others. I just show them the print out from the internet and provided the risks are worth potential rewards they help me try it.
PLease let us know of any new treatments your doctor recommends Anne . I will be sure to ask my doctors about Trifuoperazine.
Thanks Anne. Its wonderful to hear good feedback.Thank you for starting this much needed post . Trifluoperazine is a new one ,personally never heard of its use in EM. You are not the first to report positively re: Dr Jorizzo. Anne, I am so excited for you- fingers crossed. Please keep us informed (of course -i know you will ;)).
Does anyone have the name of any physicians in the New England area? I did check the master list and found a couple, but was just wondering if there are any others. Thanks so much for any help you can give me. I go to numerous physicians, including a rheumatologist and a neurologist, and none of them seem to know much about EM. Thanks so much for any help you could give me. I appreciate it!
Hi, did you come across the name of Dr. Jorrizzo in the New York, NY, area?
And how did you find that master list? I have been searching for months and can’t find one!
Thanks,
Anne
We have no master list- we are still compiling. The link is to a post 'what specialist diagnosed you'?, which was our shout out to members to share. As you see sadly only the minority share, which means many sufferers continue to struggle When you join living with erythromelalgia ,we always advise that you ask the moderator team if you need some pointers, and actively request members share their Dr's details with us ( EM diagnosis and/or treatment) .
We have two names shared for ME :-). Good luck. Keep us informed!
The original post from last year only has about 25 names on it. Alina, Nel and myself work hard networking to try to increase this ,but its a small minority that actually will share. That I do not understand ! . Also, people are eager to take names but not so eager to give feedback to other sufferers. That I also do not understand ! Because of our own poor health, compilation is taking time so thats why we ask EM'ers to contact us interim . Thanks to an EM'er that shared , you received Dr Jorizzo's details , have been diagnosed and in treatment ,and now have given wonderfully informative feedback for other members. That is both kind and generous of you, thank you :-)
Thank you so much for the two names of doctors in Maine, which is where I live. I'll have to check them out! This is encouraging!
mads said:
Hi Ladies,
We have no master list- we are still compiling. The link is to a post 'what specialist diagnosed you'?, which was our shout out to members to share. As you see sadly only the minority share, which means many sufferers continue to struggle When you join living with erythromelalgia ,we always advise that you ask the moderator team if you need some pointers, and actively request members share their Dr's details with us ( EM diagnosis and/or treatment) .
We have two names shared for ME :-). Good luck. Keep us informed!
I tried two kinds of acupuncture: Chinese and Japanese. Neither was helpful to me.
But each person is so unique, and the various causes of our EM are many, so it’s difficult to compare one person’s success/failure with the outcome for another person. So if you can afford it, it would certainly be worth exploring.
My approach when trying out a new therapy is to do exactly as the health practitioner instructs.I am sure the acupuncturist will have recommendations for you to follow.
