Yes Virginia, we have a diagnosis!!!!!

[elsieshaye]

That's my goal!  It's just not today.   

And that's totally ok, Pooh.  There's no "perfect attendance" award for being sunny and upbeat about a chronic condition, lol.   (I wish!  I am totally motivated by shiny stickers and those glitter-embossed certificates we used to get in elementary school!)

[Pooh]

Ha ha!  Maybe I should make myself one of those calendars on a posterboard and give myself a gold star for every day I don't whine!

So here's your sticker for the day!

[elsieshaye]

Hahaha!!  Love it, Pooh - thanks!!

[luise.volta]

Where does the Duck Race Doc practice? Can he direct you to the kind of knowledgeable and in-depth treatment you deserve? I know you love your M.D. but he is minimally interested at best and now is not the time for him to learn about something new with you as his only patient, is it? You need to be with someone who is committed. (Yes, I know I sound like a nurse and a mom. How could I not?)

[Rose799]

In my early 30's, I went from dr. to dr. feeling totally exhausted.  The majority were convinced it was depression.  Finally, I was diagnosed with the Epstein Barr virus.  Like you, I was ecstatic to get a diagnosis; the bad news was that there was no treatment.  Later on, I was also diagnosed with Shingles & fibromyalgia.  The pain was unbearable most days, but my dr. prescribed Advil.  I viewed him as God after finally giving me the diagnosis, but he wasn't very helpful after.   I convinced myself that I could fight it, as one would cancer.  I tried herbs & vitamins, juicing, meditation, etc.  You hit those walls when there's no where to turn.  I should never have stuck it out with my dr. all those years.  Crying in pain all night encouraged me to seek help elsewhere.  She was a family physician, but luckily, she thought outside the box.  After running multiple tests, she concluded that my immune system never fully recovered.  I was put on high doses of an anti-viral drug that's used for shingles.  Though normally prescribed for two weeks, I took it for 4 months.  I still have flare-ups, but they're not as debilitating as they used to be, and too, I now have meds I can take when they do occur.  Though I found it absurd, I learned that having dh in tow helped to insure that I was taken seriously.  Many dr's wrote me off as hormonal or emotional.  If your dr. doesn't fit the bill, don't stick it out as I did.  Venting is a good thing, too, Pooh.  It helps take some of the load off your immune system.  I know many people who contend with pain who are treated with tryclicic anti-depressants, like Amitriptyline.  It works on the neurotransmitters in the brain, & may also be of help during stressful situations.  It helped a friend with abdominal pain & also helped to ease dd's migraine headaches.  Personally, it only made me more tired.  : )  Wishing you all the best at the dr. later...   

[Pooh]

Duck Race Doc is at the Dermatology clinic that I went and got my diagnosis.  When they gave me the biopsy results, their words were, "You have this and there is no cure.  We want you to try this steroid cream for two weeks but other than that, there is not much you can do.  The head Derm guy has been known to surgically remove it to help stop the growth, but yours is way to big and crosses your elbow joint so we don't think that's an option.  See you in two weeks!"

I very much appreciate them for getting the diagnosis and knowing what it was and I will forever be thankful to my Duck, but I didn't get that warm, fuzzy feeling from them.  It was like, you have it...deal with it.  They never once offered to explain what it was or give me information.  They didn't say, "Hey there is no cure but their is trials all the time and things we can try to help relieve your symptoms.  Do you know what linear morphea is?"

After my research, I am finding there is things they can do.  There are things that help with the symptoms.  There is information available.  There are trials that come up.  I have already talked to other patients on some forums that asked if I had the red spots on my face.  I do and they said, Omega 3 fish oil helps clear those up.  Ok, seriously....a Dermatology group didn't recommend that?   It seems like the only Doctors that are knowledgable are at these centers.  They deal with it every day.  I'm not faulting the Doctors here because it is so rare, they have never seen it.  Ok..so read about it.  Contact one of the Centers and ask some questions.  See if they will send you some literature.  Call and ask them if it would be to my benefit to travel to one and if so, give me the referral.  Be proactive on my behalf.  Not because I'm paying you (which by the way...I am) but because you want to help me any way you can.   Take 10 minutes out of your day to make a phone call.  Heck, I'll pay you for the extra 10 minutes...........lol......rant over.

[Pooh]

Thank you Rose.  I'm so sorry.  It's so frustrating.  You hit the nail on the head.  I'm finding they are not very helpful afterwards.  Ok, I will see what he says.  I'm still trying to hold hope that he spent the week reading and wants to help today.  My Mother gave me a great suggestion earlier.  She called and I unloaded on her...bless her heart.  She said, "Ok, so if he will not help, instead of going from Doc to Doc trying to find one and getting all frustrated, maybe you can call John Hopkins or one of those Centers and see what Doctors they know of near you that are helping them with their patients?"

My Mother is so smart......Lol.  Should have listened to her advice when I was 18! Lol.

[Pooh]

Do ya'll get the idea that my Doctor is in for this evening? 

[luise.volta]

Oh, yeah! And if he doesn't give you a viable referral you will find your own, put it in front of him and make him sign it at gun point! You GO, girl!

[Rose799]

Check out what I just found, Pooh... 

http://www.utsouthwestern.edu/utsw/cda/dept25717/files/384413.html

[Barbie]

Pooh,
I'm so sorry to find out you're going through this and I think your mother's idea is brilliant. Further more I know of two wonderful doctors that specialize in scleroderma, both in the Washington DC area: Dr. Fredrick Wigley at Johns Hopkins Hospital and Dr. Virginia Steen at Georgetown University Hospital. You could go to either one for an initial consult to make sure you have the right diagnosis and then they could refer you to someone in your area to continue the treatment. I can tell you Dr. Steen is one of the most caring and compassionate doctors I have ever known and I've heard the same about Dr. Wigley. They are both very busy and you have to wait a good couple of months to get in but if you don't mind a few hours drive you could even turn it into a mini vacation, the Washington DC area is beautiful in the fall. Bear in mind that John Hopkins is huge while Georgetown University in my opinion is more easily accessible. You can do some research and find out more about their credentials, etc. I wish you the best of luck.
(((((((((Hugs)))))))))

[luise.volta]

I have no idea how your information will factor into Pooh's illness, Barbie, but I wept when I read your post at the compassion and support I see here.

[Barbie]

Oops! I must have misread something, Louise. Sorry for my ignorance.         
   Hugs.

[Pooh]

Thank you so much everybody.  Barbie, you made me smile.  Johns Hopkins and one in Charleston, SC are my closest that specialize in mine.  The two that are closest to me, within about 3-4 hours only do the diffuse kind, not mine.  Thank you Rose and Luise for always being in my corner.

I'm headed out now to see what he says!  Wish him luck! Lol.

[luise.volta]

Barbie, you didn't miss anything. Your post was so informative and loving that it made me weep. You're wonderful!

Pooh, we're all going with you in a magic pocket over your heart.