Any NYC PMR sufferers out there?

[dnitzy]

So happy to have found this site, but quickly realized that most of the posters are from the UK, Canada or Australia! Are there any of you from New York City or anywhere in the USA? Just wondering, and if so, perhaps we can create our own support group.

[cjatthesea]

dnitzy, I have GCA and PMR and live in the states. South Carolina and Florida. You'll find a few others, as well. I was diagnosed about fifteen months ago. My doctors know next to nothing but you'll find a wealth of knowledge here. If you haven't picked up Kate Gilbert's book....you may want to. A big help.

You should feel free to post or ask questions....there is no quick fix for these diseases. You may need some advice down the road.

Welcome to the club no one really wants to join. You'll be in good hands.

[Shastring in reply to cjatthesea]

Hi cjatthesea, I too live in Florida full time now and have found an awesome younger Rheumotologist who seems very up on pmr & gca. I began with the scalp symptoms long before the full blown pmr, was getting the head pain on & off for months thinking nothing and then in Feb. just woke up in middle of night and couldnt move my legs or arms. Also had the worse neck & groin pain and thinking I was having a stroke or just paralyzed went to emergency room only to be told to follow up with Dr. and given Naproxin. Two days later went to Rheumy and while I didnt like this 1st dr was diagnosed by blood work with the pmr and most likely gca. Glad to know there are quite a few of us unfortunate  yet very lucky to be in this support group and so appreciative for everyone here and all of their knowledge.

[katpat]

Dinitzy, I have PMR and GCA and live in the states in Tennessee.  I have an Internal Med Specialist who diagnosed PMR right away and sent me to a very good Rheumatologist--Then a few months later along came GCA. The first thing I discovered was this forum and the next thing I did was to order Kate's book as cjatthesea said. You will find the most knowledgeable folks on this forum.  It has gotten me through some very tough days. I will love to communicate with you.  Best of luck.  Don't hesitate to ask questions.

[jinasc in reply to katpat]

Have just read "Living with PMR and GCA", a new booklet by North East Support. It really is superb - a book for patients written by patients who know what sufferers are going through and need to know. Cannot praise it highly enough. Wish I'd had it when I was first diagnosed with GCA five years ago. I do hope PMR&GCAuk North East Support will be able to make it widely available. Worth whatever it costs.

[cdenoncourt]

Hi Dnitzy,

If you click on HealthUnlocked (in green) at the top of this website, you will come to a page that has "Find people near you".  The results show the distances from you of your fellow sufferers on this site.  In the US, we are spread out all over the place of course.  I live in FL and the nearest person is 164 miles away.  Statistically, there must be more sufferers in my area, but I'm not sure how I would go about finding them if they are not on this forum.

[Shastring in reply to cdenoncourt]

Hi cdenoncourt,

I also live in Florida, West Palm Beach and so happy to have found this wonderful group and so happy that there is so much pertinent information here. So many of our Dr.'s are not familiar with this disease and we all have to help each other out and there is a world of knowledge here so thank you everyone who take the time to make it available to us  especially us new comers.

[jinasc]

There is a group who started a forum/website in the USA  - if you send me a PM, with your name and email address, I can foward that information and they will get in touch with you.    The information you send will not be sent anywhere else.

I cannot put the email contact address on this website.

[dnitzy in reply to jinasc]

ok, but what's a PM??

[jinasc in reply to dnitzy]

Sent you one   PM = Private Message.

You click on the persons name and Bingo.

[Shastring]

Hi Dnitzy, I was wondering the same thing as I live in Florida. I am wondering how we can start a USA group as many I've spoken with know so little about this disease.

[jinasc]

Hi dintzy,

I emailed Audrey, who started up a group support in the States.  Audrey is quite happy for me to give you her email address if you send me a PM.

In the meantime, here is the website address for [e-mail]

On there you will meet Audrey et al and others from New York both City and State.

Also take a look at this, International Survey

We collaborated with PMR sufferer Elliott Greene from USA, in devising an international online survey for suffers of PMR and GCA. Elliott is an ex immunologist and co-owns a software company specialising in online surveys.

The survey is totally anonymous and the information accrued can be viewed free of charge to anybody. We hope this survey will aid future research projects.

quantisurve.com/cgi-bin/pmr...  this will take you to the survey and then there is a link with the results up to date.

oh and you can also visit our website pmr-gca-northeast.org.uk

[PMRpro Ambassador]

If you go to the Patient.info PMR and GCA forum you will find a lot of other people with both who are in the USA. Some people belong to both forums but there are a lot there who don't belong to this one.

patient.info/forums/discuss...

[Lafontainepam1]

I'm from Michigan, but are here in my house in Arizona until the middle of May. I am 66 years old, and have had PMR for over 4 years. I am at 5mg. Doing the slow dose down again. Flare ups are irritating, but stress will cause them! I get my support from here, they save me when I have questions, they know more than Dr's I think, unless the Dr's themselves has it! 💕 

[Tonib66]

I live in US, Vermont

[knit1purl2]

I'm in US, Pennsylvania. I do have a great Neuro ophthalmologist at Wills Eye Hospital in Philadelphia, who diagnosed my GCA. But I get most information from knowledgeable people on this forum.

[TooSore]

Connecticut close enough?