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General Category => Grab Bag => Topic started by: Pooh on August 10, 2011, 08:48:18 AM

Title: Yes Virginia, we have a diagnosis!!!!!
Post by: Pooh on August 10, 2011, 08:48:18 AM
Finally!  19 months later!  I can not tell you guys how weird of a feeling this is.  Here I am, relieved and grinning from ear to ear because I have a disease!  I have lost my freaking mind!  No actually, I finally feel like I finally HAVEN'T lost my mind!

The verdict is in kiddos.  I went to get my stitches out this morning and my biopsy results were back.  It is Linear Morphea with Deep Morphea.

I'm not a hypocondriac, I'm not loosing my mind, I'm not imagining all these symptoms, I don't have to keep being sent to different doctors for more tests and I can finally take charge, research and learn about my disease!

Hip Hip Hooray!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Title: Re: Yes Virginia, we have a diagnosis!!!!!
Post by: luise.volta on August 10, 2011, 09:26:05 AM
Is that the diagnosis the "Duck Race Doctor" gave you? How wonderful to be back in the land of the "known."  ;D Action follows fact! Healing follows action! Yay!

I have a friend who called me to tell me how thrilled she was to find out she had cancer! I'm serious. She had lost her mom to undiagnosed cancer. They never found it until after her death so they couldn't address it. My friend turned out to have a slow growing lymphoma that is very responsive to specific chemo and she only goes every six months to make sure all is well. Everyone thought she was nuts when she joyfully proclaimed she had cancer. But what she was really celebrating was finding out what she was up against so she could do something about it.

We can't fight a hidden enemy. Now you can move forward and get your life back!  :-*
Title: Re: Yes Virginia, we have a diagnosis!!!!!
Post by: lancaster lady on August 10, 2011, 09:28:04 AM
Thank Goodness !!
No more guessing games ....hope they can help you now Pooh ...healing hugs on their way ..... :-*
Title: Re: Yes Virginia, we have a diagnosis!!!!!
Post by: pam1 on August 10, 2011, 09:30:40 AM
That's great you finally know!  I'm curious if it is the same diagnosis the "duck doctor" gave you?
Title: Re: Yes Virginia, we have a diagnosis!!!!!
Post by: elsieshaye on August 10, 2011, 09:56:32 AM
I'm so glad you have something concrete to work with now!  What a relief. :)
Title: Re: Yes Virginia, we have a diagnosis!!!!!
Post by: Pooh on August 10, 2011, 10:25:33 AM
Thanks guys.  Yes, that this the Duck Race diagnosis! Lol.  Bless him.
Title: Re: Yes Virginia, we have a diagnosis!!!!!
Post by: Pen on August 10, 2011, 06:50:33 PM
What an amazing story. I'm so glad you know now!! Yay!
Title: Re: Yes Virginia, we have a diagnosis!!!!!
Post by: luise.volta on August 10, 2011, 06:56:01 PM
Morphea meaning "sleep", right?
Title: Re: Yes Virginia, we have a diagnosis!!!!!
Post by: Pooh on August 11, 2011, 06:40:56 AM
I wish  :D

You made me have to google it! Lol.  It's a Greek word meaning "form" or "structure".  Bah...
Title: Re: Yes Virginia, we have a diagnosis!!!!!
Post by: Rose799 on August 11, 2011, 06:48:42 AM
Now that you have a diagnosis, hopefully, they'll know how to prevent it from flaring.  Wishing you all the best, Pooh...

(((hugs)))
Title: Re: Yes Virginia, we have a diagnosis!!!!!
Post by: luise.volta on August 11, 2011, 07:01:49 AM
 ;D ;D ;DI was thinking of the Greek God Morpheus.  ;D ;D ;D
Title: Re: Yes Virginia, we have a diagnosis!!!!!
Post by: Pooh on August 11, 2011, 07:37:52 AM
Well that explains the Greek part!
Title: Re: Yes Virginia, we have a diagnosis!!!!!
Post by: luise.volta on August 11, 2011, 08:11:09 AM
;D ;D ;D
Title: Re: Yes Virginia, we have a diagnosis!!!!!
Post by: Pooh on August 11, 2011, 08:23:30 AM
Quote from: Rose799 on August 11, 2011, 06:48:42 AM
Now that you have a diagnosis, hopefully, they'll know how to prevent it from flaring.  Wishing you all the best, Pooh...

(((hugs)))

Thanks Rose!  Unfortunately, there is no definitave reason for flares.  There has been considerable data pointing at stress as a major factor and environmental exposure to chemicals?  That's about all they can say that seems to be a consistant with patients.
Title: Re: Yes Virginia, we have a diagnosis!!!!!
Post by: luise.volta on August 11, 2011, 08:40:13 AM
Is there anything they can do to relieve symptoms when it flares up? (Said she, hopefully.)
Title: Re: Yes Virginia, we have a diagnosis!!!!!
Post by: Pooh on August 11, 2011, 09:47:21 AM
They can, but the side effects are stinky.  The biggest problem for me will be a major flare where the groove deepens or starts lengthening.  They said that would mean more tissue and muscle damage and that's what they want to avoid.  Have to kill the immune system down to do that.  Prednisone for the inflammation and they have 3-4 immunity killing drugs they can try.  All of them have icky side effects.  My experience last time was yucky!

Everything else is not so bad to help relieve.  Fever blisters, my MD gave me a prescription for flares of that, I'm already on Lyrica and a muscle relaxer to help with pain.  The fevers and joint pain, just Advil.  They have me on Nexium right now for two months to try to help heal my esophagus....another lovely manifestation of this is GERD.  They think my chest pains are actually my esophagus spasming and that's all I can think of right now...Lol.  I'll have to just deal with the fatigue.  I'm actually hoping since this "fitness plan" we are on is giving me more energy, that it will help the fatigue not be so bad now.

They are suggesting that I have an EMG to see how badly the nerves and muscles may be damaged.  Also it will determine if I have carpal tunnel, which is a major side effect of having it on my arm.  The pain in my hand and numbness could be that.  My MD was wanting to do that one too because of the "cyst" or whatever it is on the back of my hand.  He said the same thing about carpal tunnel could cause that as well.  I told him that I would see if my hand was worse by the time I go for next regular appt in November and decide then.

But!  Here's that word.......I'm reading like crazy.  I'm hoping I will stumble across some things that might help from others that have been dealing with this.  I figure they are better sources than a Doctor that just reads about it.  They live with it.
Title: Re: Yes Virginia, we have a diagnosis!!!!!
Post by: luise.volta on August 11, 2011, 10:12:01 AM
Wow! That's a lot to assimilate! Prednisone is deadly but I have had to put it in my eye every day since I got Shingles in my eye six years ago. The Prednisone caused glaucoma and I had to have surgery for that after the glaucoma meds caused hypertension. Then the cornea finally had to be removed because the Shingles were thriving...in spite of everything...in the nerve endings of the optic nerve.

I honestly think that the increased oxygenation you are creating through exercise may be a major factor in managing it. Oxygenation brings increased oxygen to every cell and may do you more good than you can imagine.
Title: Re: Yes Virginia, we have a diagnosis!!!!!
Post by: Pooh on August 11, 2011, 10:55:15 AM
I think the exercise is truly helping.  It hurts when I do the actually exercising of my arm and shoulder, but when I get up the next morning, it feels better.  I'm hoping that will help strengthen the muscles as well.  I didn't think about the oxygenation part but I bet you're right!
Title: Re: Yes Virginia, we have a diagnosis!!!!!
Post by: luise.volta on August 11, 2011, 11:01:34 AM
It's the nurse in me.  :)
Title: Re: Yes Virginia, we have a diagnosis!!!!!
Post by: Rose799 on August 11, 2011, 02:17:45 PM
Nurse Luise, how do you feel about this?  I just heard about this recently...another reason to exercise, if true.  I got my exercise done for today & am on track with the diet.  Exercising was disaster at first, but it does feel pretty good now that I've recuperated.   ;D

http://www.livestrong.com/article/168080-lymphatic-drainage-exercises-massages/
Title: Re: Yes Virginia, we have a diagnosis!!!!!
Post by: Sassy on August 11, 2011, 03:51:21 PM
Pooh, I feel your relief.  I looked it up, too.  I'm so glad you took the time and perseverity to find a doc who took the time and effort to make a dx, since it seems pretty uncommon.   (A friend of mine who practices medicine says most docs think of the Top 25 most common ailments and past that, they're puzzled.)  One place I saw it written that morphea affects only 2 or 3 people per 100,000 people.  But you, pooh, you're one in a million!
Title: Re: Yes Virginia, we have a diagnosis!!!!!
Post by: Sassy on August 11, 2011, 03:58:17 PM
http://www.experienceproject.com/groups/Was-Told-That-I-Have-Morphea/146034

http://www.dailystrength.org/c/Scleroderma/support-group
Title: Re: Yes Virginia, we have a diagnosis!!!!!
Post by: Pooh on August 12, 2011, 07:39:39 AM
Awww...thank you Sassy!  I ran across some statistics yesterday that said if affects only 20 in 1 million so that would fall in line with what you found.  I have also been reading that most people, it tooks years for them to get a diagnosis because it's so rare that most Doctors have never seen it.  Most of them it took 7-15 years to finally figure it out, so now I am feeling guilty for whining about my 19 months!

Thanks for the links.  I signed up for the support group and have already found some great information.  Thank you!

Rose, that is interesting.  I would have never linked oxygen to lymph node drainage.
Title: Re: Yes Virginia, we have a diagnosis!!!!!
Post by: Pooh on August 12, 2011, 07:40:26 AM
And don't think I didn't tell my DH last night that from now on, he better tell people that he found a rare wife! Lol.
Title: Re: Yes Virginia, we have a diagnosis!!!!!
Post by: luise.volta on August 12, 2011, 08:32:23 AM
I love the up way you are approaching this and how your humor keeps seeping in. You are rare indeed!
Title: Re: Yes Virginia, we have a diagnosis!!!!!
Post by: pam1 on August 12, 2011, 08:39:18 AM
Pooh, wow...just wow.  That's a lot to take in!  I'm impressed with how well you're handling it. 
Title: Re: Yes Virginia, we have a diagnosis!!!!!
Post by: Pooh on August 12, 2011, 09:05:00 AM
Thanks!  I'm not promising I will not have bad days and whine...Lol...but seriously, there is nothing I can do about it.  Kind of like my OS/DIL.  It wasn't my choice and now I have the right to decide how to live my life.  I can lay down and die or deal with it and enjoy my life.

I got a fit of the giggles about it last night.  Don't know if it was stress relief finally or just me being silly, but I couldn't help it.  You remember that old joke about a guy shot his horse because it broke it's leg, so now he has a horse with a broken leg and gunshot wound?  Ok, if you haven't....laugh right now.  I got tickled last night because I just realized that I have been telling people for a year and a half I have a groove down my arm.  Now, I have a groove with a scar in it!  (from the biopsy)

Do not ask me why I found that so dang funny....but I was remembering that old joke! 

Title: Re: Yes Virginia, we have a diagnosis!!!!!
Post by: Pooh on August 18, 2011, 07:10:30 AM
So even though I have tried to have a good attitude about this, I hit a wall last night.  I know part of it is that I am still having a minor flare, which makes me feel blech....combined with I took the last dose of a medicine Saturday and am feeling the rebound effect from going off of it. (That is better today.)  I have figured out that I do well until I get several weeks into a flare and then I get tired of hurting and feeling bad.  I'm trying to figure out some coping skills when I hit that point.

Part of my wall is also all the reading I have been doing the last week.  I believe in educating myself, but it's just depressing at the same time to read over and over again "no cure".  It hit me last night that I am going to be in pain the rest of my life.  Then I felt bad about feeling bad about it because I got the good one.  I'm reading over and over again, people that have the other form and their life expectancy is only 10-15 years.  How selfish am I to be whining about mine?  Geesh.

I also know that I am mad at the Doctors.  I see my MD today and I'm mad at him.  He is a great Doctor, the only one I have ever had that I feel like he cares.  Last appointment, when I told him what the Dermatology guy suspected, he seemed nonchalant about it and didn't agree.  He said he had never heard of that type of Scleroderma and I didn't show the same signs of the other kind.  That's actually one of the things I like about him, he never lies to me.  He's not afraid to say that he doesn't know about something.  So I called and left a message for him Friday telling him about the positive biopsy and wanted to know if he was interested enough to read up on the disease and continue to treat me.  He hasn't called.  I'm hoping it's because he saw I was scheduled to come in today and wants to talk face-to-face, but it also made me feel like he had no interest.  Ok, I'm being a whiney-butt today and I know it.

In my research, it is repeated over and over that I need to get to a Scleroderma Center and see a specialist that that does care and is knowledgeable.  They are saying that they will lay out a plan of action and work with your local MD or Doctor of your choosing to monitor your care.  That sounds great and I wouldn't mine having to travel 7-10 hours to go to one of those but first I have to find someone local that gives a darn and is willing to work with the specialist....sigh.  The good news is if I do travel to one of those, it also will start a case file with them so if some new drug comes up in a trial and I fit the criteria, they would call to see if I wanted to try it.  Again, that is all based upon having a Doctor local that will monitor and work with you....sigh again.

Ok, so I'm trying to remain positive today and think that I will walk in this afternoon and he will be all willing to do all this.  Positive thoughts....positive thoughts....
Title: Re: Yes Virginia, we have a diagnosis!!!!!
Post by: elsieshaye on August 18, 2011, 07:19:10 AM
Pooh, sending you my best thoughts.  I think it is part and parcel of a chronic health condition to feel like this about it, especially soon after your diagnosis.  When I was first diagnosed with diabetes, I was the positive-attitude-take-charge poster child at first, but a few months later I just crashed, burned and got rebellious and sad/angry/scared.  It's good that you're aware of how you're feeling.  You'll get back to your old, positive self, but sometimes you just need to give yourself some time to process and feel sad and angry.  It really doesn't matter that you "don't have it as bad" as some other people - that doesn't make your own grieving any less valid.  ((((Pooh))))
Title: Re: Yes Virginia, we have a diagnosis!!!!!
Post by: Pooh on August 18, 2011, 07:26:30 AM
Thank you elshieshaye.  Knowing you know helps.  I know it's part of it, but dang it...I hate feeling this way!  I know you have struggled for along time with your diabetes and I'm so sorry.  My GM was a diabetic and I know how hard her day to day life was.  Two shots a day, monitoring her blood sugar, planning her meals...on and on.  She never complained and never said a word, always a smile on her face and a positive disposition.  That's my goal!  It's just not today.   ;D
Title: Re: Yes Virginia, we have a diagnosis!!!!!
Post by: elsieshaye on August 18, 2011, 07:29:59 AM
Quote from: Pooh on August 18, 2011, 07:26:30 AM
That's my goal!  It's just not today.   ;D

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!)
Title: Re: Yes Virginia, we have a diagnosis!!!!!
Post by: Pooh on August 18, 2011, 07:36:37 AM
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!

(http://i588.photobucket.com/albums/ss323/Euler5853/Great/CluckCluckTagGreatJob.gif)
Title: Re: Yes Virginia, we have a diagnosis!!!!!
Post by: elsieshaye on August 18, 2011, 07:39:11 AM
Hahaha!!  Love it, Pooh - thanks!!
Title: Re: Yes Virginia, we have a diagnosis!!!!!
Post by: luise.volta on August 18, 2011, 07:52:57 AM
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?)
Title: Re: Yes Virginia, we have a diagnosis!!!!!
Post by: Rose799 on August 18, 2011, 08:29:37 AM
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...   
Title: Re: Yes Virginia, we have a diagnosis!!!!!
Post by: Pooh on August 18, 2011, 08:38:49 AM
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.
Title: Re: Yes Virginia, we have a diagnosis!!!!!
Post by: Pooh on August 18, 2011, 08:41:58 AM
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.
Title: Re: Yes Virginia, we have a diagnosis!!!!!
Post by: Pooh on August 18, 2011, 08:44:17 AM
Do ya'll get the idea that my Doctor is in for this evening?  ;D
Title: Re: Yes Virginia, we have a diagnosis!!!!!
Post by: luise.volta on August 18, 2011, 09:18:35 AM
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!
Title: Re: Yes Virginia, we have a diagnosis!!!!!
Post by: Rose799 on August 18, 2011, 09:33:00 AM
Check out what I just found, Pooh...  :)

http://www.utsouthwestern.edu/utsw/cda/dept25717/files/384413.html
Title: Re: Yes Virginia, we have a diagnosis!!!!!
Post by: Barbie on August 18, 2011, 10:46:51 AM
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)))))))))
Title: Re: Yes Virginia, we have a diagnosis!!!!!
Post by: luise.volta on August 18, 2011, 11:00:57 AM
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.
Title: Re: Yes Virginia, we have a diagnosis!!!!!
Post by: Barbie on August 18, 2011, 12:18:34 PM
Oops! I must have misread something, Louise. Sorry for my ignorance.         
   Hugs.
Title: Re: Yes Virginia, we have a diagnosis!!!!!
Post by: Pooh on August 18, 2011, 01:08:18 PM
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.
Title: Re: Yes Virginia, we have a diagnosis!!!!!
Post by: luise.volta on August 18, 2011, 01:17:36 PM
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.
Title: Re: Yes Virginia, we have a diagnosis!!!!!
Post by: Smilesback@u on August 18, 2011, 04:10:37 PM
I am so sorry Pooh, sweet Pooh.  I can definitely chime in and say that in the past three days, again I recognize how *strict* insurance coverage is becoming in giving out your benefits.  And how pissed I am at the medical and dental duck race to deal with insurance issues.  Carpal tunnel syndrome and cracks in teeth are the issues.  And the insurance company is dictating to doctors if and when they will allow treatment.  Hey - they are not gods and neither are the doctors.  At some point, insurance PEOPLE gotta ask themselves, would you treat your own family that way -- or want to be treated like that?   I am so glad you are being assertive when it comes to your health.  Don't quit advocating for yourself and teaching your DH to do it for you too.  Some days it is just too much to ask to get through the day AND convince medical staff to dig deeper.  Sorry again, Pooh.  sending you hugs,
Title: Re: Yes Virginia, we have a diagnosis!!!!!
Post by: Pooh on August 18, 2011, 04:29:20 PM
Thanks Smiles.  That was actually why I had to go off one of my medicines early Saturday.  Insurance sent a letter saying they would not pay for it any longer as it wasn't necessary.  I was mad, but it made me madder to read a line that said, "Out of courtesy, we are going to pay for the two prescriptions you have already filled."  Out of courtesy my hiney!  They get paid their premium every month! 

Smiles, I can't turn DH loose on them.  He is more than supportive and would probably get himself thrown out....Lol.  He's more frustrated than I am I think.

I'll catch you guys up tomorrow but all in all, the Doc visit went well.  I get to start predisone tomorrow (joy, joy) but we are going to try to take it and wean off of it quickly as the side effects are really bad.  I had to take it a few years ago for something (Z-Pac I think) and I remember it made me cranky, flushed, blood pressure up....and just blah.  But it's that or the chemo pills to suppress the immune system and I would have to take those for months.  This is the lesser of the two evils for now.  I am definately still flaring, was running a fever when I got there and have these lovely little bug-looking bites now breaking out all over my left side (that's a new one).  He said it was one of the symptoms of an autoimmune flare and I had just been lucky not to have them before now.

Can I give a blanket apology now for anything I might say over the next couple of weeks?  Thanks everybody for the support.
Title: Re: Yes Virginia, we have a diagnosis!!!!!
Post by: Smilesback@u on August 18, 2011, 04:53:20 PM
We got your back Pooh, rant on, rev up and do what has to be done for what's best for you.  (Thus, for the grace go I - it could be any one of us someday).  Take heart, you are strong. 
Title: Re: Yes Virginia, we have a diagnosis!!!!!
Post by: Rose799 on August 18, 2011, 08:00:29 PM
Glad to hear your dr. appt. went well, Pooh.  Rant away, no apology necessary, Pooh...
Title: Re: Yes Virginia, we have a diagnosis!!!!!
Post by: luise.volta on August 18, 2011, 08:39:38 PM
Lovely Pooh - The whole lot of us are going to do it with you. I know you have to take the brunt of it but you have and army behind you!!! Sending love...
Title: Re: Yes Virginia, we have a diagnosis!!!!!
Post by: Pooh on August 19, 2011, 06:50:06 AM
You guys are great and I want to say thank you to everybody for the support.  It does help me to know that I have that army that are my cheerleaders.  I have a wonderful DH, DM, SF, SM and DF, friends and you guys.  I don't know how people that are dealing with things like this do it without support.  Thank you from the bottom of my heart.  I love you all.
Title: Re: Yes Virginia, we have a diagnosis!!!!!
Post by: Rose799 on August 19, 2011, 07:07:07 AM
It's easy to be supportive, you're such an inspiration to everyone, Pooh...   :) 
Title: Re: Yes Virginia, we have a diagnosis!!!!!
Post by: Pooh on August 19, 2011, 10:16:24 AM
The Doctor story.  He surprised me.  They left me in the waiting room for 30 minutes which is actually odd for them and why I started scheduling their last appointment of the day.  They usually get me in and out.  The nurse told me as soon as she called me back, that he had her do it on purpose.  He wanted to spend some time talking to me.  Ruh roh!  Lol.  One of the reasons I love my MD is actually because I love his nurse.  She has Lupus and has been fighting it for 10 years.  During all of my stuff, she has been adamant to him and me that I had something autoimmune because my symptoms matched hers to often.  She has been very understanding and listens.  She shares her own stories with me and doesn't hesitant to pull up her pants leg and show me something.  She is a hoot too.  She is smartmouthed, funny and I have heard her tell him off on more than one occasion when she thinks he isn't doing something she should.  He has told me that she drives him batty but he wouldn't trade her for the world because he would be lost without her.

So, 2 weeks ago, I woke up to find 3 little bug bites on my thigh.  They looked like spider bites.  I had this horrid picture that some little spider had crawled in bed with me!  So I strip the bed and remake it.  Went on to work and itched all day.  3 days later, I find another one on my upper thigh and thoroughly ended up scrubbing my bedroom down that evening thinking that spider is still somewhere.  I vacuumed, scrubbed, took curtains down...Lol.  This week, I find one on my stomach and now I'm getting paranoid.  Shingles? Scabies?  Allergic reaction?  Ha ha ha...I'm such a dork.  Yesterday, while I'm at work, I get one on my back..so now I'm convinced it's not a spider unless it's hitched a ride to work.  So I'm telling the nurse about it asking if she thinks I'm getting shingles or something and she lifts up her pants leg and says, "Do they look like these?"  Poor thing has about 50 of them on her lower leg and she says they go all the way up to her hip, on her tummy and back.  They looked exactly like that.  So we compare bumps while she explains it's another thing that happens in autoimmune and they don't know why.  The theory is that if you have fever blisters (the herpies virus) when you have a flare, that basically it's fever blisters breaking out on your skin.  The virus is active and the extra antibodies are kicking it into overdrive.

So Doctor comes in, says he understands I'm running a fever, now have the blisters and have been in a flare for 3 weeks now.  With the blisters, he says that means I'm in a good flare or headed for a really good one and we need to act now to stop it.  He starts talking about what we are going to do first, what will be plan B, the side affects, the upsides - the downsides and I'm just kind of staring at him and listening.  When he's done I started laughing and he said, "What are you laughing about?"  I told him that I came in ready to do battle and was going to confront him about if he was going to treat me.  He told me I was silly and if I hadn't figured out by now that he doesn't give up that easily then I was going to find out now.  We had a serious talk then about his ability and willingness to treat me.  He told me that honestly, he knew nothing about my exact disease but that he had read some on it and the treatment was exactly the same of other autoimmune.  He said that autoimmune were autoimmune when it came to flares and many of the symptoms.  There were only slight differences from disease to disease and that since he read my particular one didn't go after organs, he was confident in his ability to treat it.  If things were not working or he felt later that he needed help, he would gladly refer me to one of the major centers if I wanted to go and we would go from there and we would learn together.

So good visit.  I still love them to death.  I will be starting on the first line of defense tonight for a period of two weeks to try and kill the flare.   Awful side affects and not going to be fun but got to do it.  If it doesn't work, we move on to plan B and months of immune killing drugs which is worse but hopefully not necessary.  So away we go!
Title: Re: Yes Virginia, we have a diagnosis!!!!!
Post by: Smilesback@u on August 19, 2011, 10:44:51 AM
Ruh roh! You made me smile, you are inspiring - and I am thinking you are a lot stronger than I thought cuz you really are dealing with some heavy stuff here.   Staying close by, hugs to you.
Title: Re: Yes Virginia, we have a diagnosis!!!!!
Post by: sesamejane on October 04, 2011, 08:35:06 PM
Yes, Pooh. Stay close by.  Sounds like this doc has your back for sure.