I got it! Hot diggity dog, I got it!

[nussy]

 Never thought I'd be happy about having a malady, but my rheumy just confirmed it today!

RA in my hand, osteo in my back and secondary SjS (albeit blood work negative, but he is treating it!)

(A small, happy image follows....)


Put me on plaq and pilocarpine, wait 3 months and may add prednisone at that time.

I can't begin to tell you what a relief it is to actually have a disease that I can hang my hat on.  Ten or 20 years of raised eyebrows and judgement glances make one feel pretty unsure of themselves, yes? Especially when they really hurt.

I want to thank you all for the initial help and encouragement.  I'll be back for more, I'm sure!

God Bless,

-nuss-

[eyeamdry]

Nuss, congrats on your "victory."  Plaquenil and (maybe) later prednisone sounds about right to me.  I'm on both, but weaning off the prednisone after 2 years.  I also take methotrexate.  I've had no problems with Plaquenil and I hope you don't either.  Lucy

P.S.  No, you aren't crazy!

[Scottietottie]

Hi Nussy  

Well - I'm glad that you're so upbeat about it!
 I know what you mean though - it's much better to know than to be left floundering in uncertainty!

Remember that Plaq can take up to 6 months to kick in! (It happens sooner for some) Looks like the doc's on the ball.

Will be good to see you around.

Take care - Scottie  

[nussy]

Thanks Lucy  & Scottie! 

Well, we'll see how it pans-out.  The doc is good.  He's a Yaleie, so generally our personalities would clash, but he's OK.

Just called our funeral directors and cancelled my headstone ("See, I told you I was sick").  Don't deed it now as I have an DX...Saved $350!)

Also had lower plugs installed at the eye docs last week and dry eye is 35% better.

Feeling really good.  Sincere thanks to you all!

-nuss-

[Linda196]

This seems to be one of the rare occasions that Hallmark doesn't have a card for, but ...

CONGRATULATIONS!

[nussy]

Thanks, Linda! LOL        

[Pooh]

Congratulations Nussy, so glad you have been given a label.   And no you are not crazy.  I know how I felt the day I finally got my tag.  If I hadn't hurt so bad, I would have jumped for joy. 

Take care and I hope you have great luck with the Plaquenil and if you need the Predisone, good luck with that also. 

Hang in there,

Pooh

[Skylar]

LOL Nussy - you have such a great attitude. Congratulations on your diagnosis and I hope the Plaquenil kicks in quickly.

Skylar

[Billydude]

I remember feeling the same exact way.    Congrads....   

[nussy]

Thank you all for the kind words and support.

Few people are able to appreciate anyone being elated after learning they have a malady.  I know you guys do as we've been kicked from doc to doc for soooo long and now we can just settle-down and be sick, yes? LOL 

I'm coming down a little today as the AR pain is bringing me back down to earth, but I'm picking up the plaquenil at lunch and I have high hopes.....(can I have a glass of wine with the plaq?).

My best to you all !

-nuss-

[Billydude]

Plaquenil never stopped me from having my glass of wine or two.
Before my diagnosis I went to a UCSF Sjogrens study where I went from test to test.  I remember the guy that did my schrimers eye test passed me back to the main doc saying .  He passed the test  guess he's not one of us.   I remember feeling so incredibly let down by that.  I just felt like I'd have to start over from scratch trying to figure this out.   I was finally confirmed with SjS via lip biopsy and was very happy about it.   At least I know what I was dealing with.   The unknown was driving me crazy.
Steve

[nussy]

Thank you, Steve.

My rheumy said that with the RA and dry-everything, SjS was a gimme but wouldn't be written-in-stone without a lip biopsy.  But, he said why go to the pain and expense of the biopsy when I'm going to treat you for it anyway.  Makes sense to me!

My primary concern was acquiring Non-Hodgkins lymphoma down the road and having it be undetected without an SjS DX.  But, I would suspect that disease would show up in a routine complete blood count (?)

Anyway, it's just nice to know what you really have instead of thinking that you are simply a hypochondriac.

On that, I'm going to chill some wine... LOL (THANKS!)

[Billydude]

Hi Nuss,   I didn't think the lip biopsy was too big of a deal.  It was healed in just a few days and didn't cause any pain.  But,  I did have it done by someone who knew what she was doing as she does them every day.    My biggest recomendation is to have it done by an expert at it.
All my blood work showed negative but I was interested in an official confirmation since I'm in the process of applying for SSI disability and the disability people will need an official confirmation.
Steve

[eyeamdry]

With regard to a lip biopsy:  Quite a few of us on here have been left with a numb lip, including me.  Mine was almost two years ago.

Secondly, the lip biopsy is open to interpretation by individual doctors.  The rhemy ordering mine said it was "negative" but the oral surgeon doing the biopsy had told me the result was '"positive."   All my other docs said it was "positive" but with the first rheumy saying I was ok, he sent me off with a slap in the back and a prescription for an old NSAID. 

Fortunately, my bloodwork with another clinic was positive and that proved the lip biopsy and the first rheumy full of hot air.  I say that I would only have a lip biopsy if it meant I would be eligible for extra treatment for the disease, or I would win a million dollars.  It's not as "black and white" as people think.  I had the lip done for nothing, because my bloodwork was positive at the time.  Lucy

[nussy]

Hey, Steve!

Having the lip biopsy for a disability claim makes sense to me.  I'm glad that you didn't have any problems.

And Lucy, I'm sorry to hear you had so much trouble. That's the pitts.

I sincerely believe that doctoring is an art and not a science. Last year, I went to a huge osteo clinic to find out what was making my hands hurt.  The doc took 27 digital x-rays of my hands and returned with the DX of osteo arthritis, not rheumatoid.

My new rheumy only took two x-rays of my hands and said I had a very minor case of rheumatoid arthritis that would not be detected by 80% of doctors.  So even though blood was nominal, the proper interpretation of the x-rays sealed the deal.

It seems so cruel and unjust that most of us are at the mercy of doctors that either don't have the knowledge, or refuse to spend the time for a proper diagnosis.

I was thinking about LASIK for my eyes before this SjS thing, but my past experience with doctors squelched that in a hurry!