Rheumy

[angielyn]

Well, since last year I had changed my pcp. who has since ran every test under the sun, moon and stars to figure out what is going on. So... back to the Rheumy I go.  Between my symptoms and what the ENT thinks she agrees with them that 1. Yes, it is AI and 2. Very well could be Sjogren's. Which is what the Rheumy felt when I seen him last (only appt. with him) but when my blood work came back neg. he said no... NICE I know But, since I have the ENT saying possibly sjogren's I'm hoping it may give him a boost to think outside the darn blood work. I have been going through this since my early 20's and I am now 40. I'm sooo done and sooo tired of getting ANA tests when they constantly come back neg. and yep that is how long I've been having my ana checked. ANA does not live here Dr's

So, I call and my appt. is Feb 21st. What really stinks is he is a 2hr drive each way I do have a script to have my ana lvl and sjo antibodies checked yet again which yet again will be neg. It's just so darn discouraging. How long does one have to suffer. Isn't almost 20yrs long enough.

With that said does anyone know where a good place to find info. on a rhemy is? I tried google but didn't find anything. Mine is out of Penn State Hershey if that helps.

Thanks 

[rnathans]

Who do you see out at Hershey? I have seen Dr. Ostrov there and was diagnosed despite negative antibodies and a lip biopsy that was originally read as negative. She found foci- not the magic number needed for diagnosis by official standards but she felt it was suggestive of Sjogrens. I mainly see a neuro out there, not her, since my main problems are neurological, but at one time her treatment suggestions were key.

[angielyn]

Dr. Enama is who I'm seeing. I go to the Middletown office since it is a tad bit closer for me. I seen him once and he seemed very thorough so I'm going to hope for the best. I also have a neuro. appt but not out there, ugh to far for me to drive!

[jmkboyer]

Some rheumatologists cannot see past the blood work.  It's incredibly frustrating.  The first one I had refused to diagnose me even though I had a high ANA and all the symptoms.  I tried to explain to him that I could actually read and research and I knew that a large number of Sjogren's sufferers do NOT test positive for the more specific SSA-B that he was looking for (along with more who don't even have the high ANA).  Still refused.  BTW, very nice man, late 30's, wanted to help.  But completely stuck in his black and white rut.

So I kicked him to the curb and went up the food chain.  The head of rheumatology at our local University Medical Center took one look at my blood work and anecdotal history and immediately gave me a diagnosis.  It was overwhelming and anticlimactic at the same time.

So if you find yourself hitting your head against a rheumatology wall, then know that it's not the end.  Look for someone else.

Good luck!

MB

[Shelly]

I'm not sure which way you are coming from when you go to the Hershey Medical Center, but if you are coming from the east, I see a rheumatologist in the St. Luke's network (Dr. Howard).  He is at the Bethlehem and Quakertown locations.  Also, there is the Lehigh Valley Health Network around there which is supposed to be phenomenal.  Philadelphia might have a wealth of rheumatologists to offer as well - as the city has some of the best hospitals in the country.  I have just been recently diagnosed with SJS so I am educating myself on the rheumatologists around the area - hoping to find some that specialize in treating SJS.

Best of luck!

[rnathans]

I live in the Lehigh Valley and had to go to Hershey to find a good rheumie. Is Dr. Howard new? DH worked at St. Luke's until a year ago and never mentioned him as an option. It would be nice if there is now a good rheumie in the Valley.

[angielyn]

I'm about half hour from Bethlehem. I tried getting an appt. through St Lukes since that is where my PCP is through. But, the waiting list was 8 months long when I called them last time. I could always call and try again. With the ins. I have my options are so limited I'll see if I can find them, give em a call and see how it goes.

btw way, hello neighbors 

[Shelly]

Wow, I cannot believe we are all living in or around the LV!  Here is the link to Dr. Howard's page on the St. Luke's website:

http://www.mystlukesonline.org/find-doctor/doctor-detail.aspx?doctorId=1093

When I originally went to make an appointment with him, the scheduling coordinator also told me it would be months until I saw him if I saw him at the Bethlehem location.  She then suggested I call the Quakertown location and gave me the number.  I called the Quakertown office and I was seen the next week 

Overall, he is 'okay' in terms of his bedside manner but if you do not want a 4 hour round-trip to another rheumatologist I'd recommend him!  He ordered the appropriate tests and that's why I am here on this website right now!  He did not offer much in terms of preventative treatment (which is what I was hoping for) for SJS, but I will be followed by him and have my blood work monitored twice a year.  I'll keep you posted if I find out anymore info on local rheumatologists - if there is one that seems particularly great I might switch!

[angielyn]

Blah I figured, they don't take my ins. 

[rnathans]

I guess it depends on how bad your symptoms are. I was in bad shape and needed aggressive treatment. It was worth it for me to go to Hershey. That said, it would seem to me that with a confirmed dx of SS any rheumy worth anything should be offering plaque nil as an option as well as symptomatic relief.

Thanks for the link for Dr. Howard. If he is based mostly in Quakertown that would explain why we are not familiar with him.

[angielyn]

My symptoms are to bad for me to not drive to Hershey    Only thing that really bothers me with driving to Hershey is not knowing how I'll feel that day and having to drive myself the 2hrs each way. Other then that I don't mind the drive at all. I kinda like the little road trip