Author Topic: YES!!! GREAT NEWS!!  (Read 2734 times)

grammad97

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YES!!! GREAT NEWS!!
« on: November 01, 2013, 01:08:32 PM »
Finally after 16 years of dancing around some diagnosis ' its official that I have Sjogrens. (A doctor said it in 2007 but somehow records got lost to prove it. )
My new doctor said I absolutely have sjogrens based on my symptoms and history. She knows what sjogrens is and that's so fantastic.
She is having me check in with an in house rheumy and pain Dr but she said she will be my primary doc for prescribing RX and ordering tests and treatments.
I am overjoyed to have a great doctor; excellent medical facility and awesome new health plan.
Happy dance happy dance!!
Primary sjogrens, UCTD; osteoarthritis;osteopenia; HBP ;fibromyalgia;RX-plaquenil, butrans 20mcg patch ;flexaril;hydrocodone5/325;restasis, omega3, vit D, super B complex;s ;gluten free;lisinopril;moderate hearing loss

SjoDry

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Re: YES!!! GREAT NEWS!!
« Reply #1 on: November 01, 2013, 01:18:50 PM »
So happy for you!  Even when you already know it, there is just something validating about having a good doc diagnose it.

Sjodry
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Female 55 y/o; SJS Primary; CVID; Autonomic Neuropathy: Chronic Digestive/G.I. issues; Leukopenia;Tachycardia; Bronchiectasis; High Blood Pres; R.A.;Chronic Pain; Sub~Q IVIG infusions~Hizentra; Plaquenil; Restasis; Gapapentin; Breathing/nebulizer meds; Pain meds;

Chris

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Re: YES!!! GREAT NEWS!!
« Reply #2 on: November 01, 2013, 01:25:54 PM »
I am happy that you are happy!!:)
47 year old mom of two. Sjogrens, Hashimotos,small fiber neuropathy, neurogenic atrophy(myocitis)
Armour, methotrexate, plaquenil, folic acid,
Vit D3',Claritin, ,Ivig, Rituxin

finallyadx

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Re: YES!!! GREAT NEWS!!
« Reply #3 on: November 01, 2013, 01:40:11 PM »
Congrats - having an official diagnosis and finding a great dr is half the battle.  Sending positive thoughts and prayers your way.
Primary ss dx 2013, plaquenil, vitamin d, iron supplements, vitamin b12, d-mannose for chronic UTI's, magnesium for heart palpatations and Zinc

Ripvanann

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Re: YES!!! GREAT NEWS!!
« Reply #4 on: November 01, 2013, 02:33:55 PM »
Aaaah! Sweet vindication and validation! Almost feels as though they should give us some sort of certificate for framing, right? Maybe a card to carry in our wallet. =)

I'm so happy to hear that things are looking up with your care Gram! Good Thanksgiving coming!

Peace and blessings to you,
~Andrea
Primary SjS, Steroid Induced Cushing's Syndrome, RA, Thyroiditis, Hyperparathyroidism, Raynaud's, Autonomic & Small Fiber NLeuropathy, Fibro. Osteoporosis, & other fun stuff associated w/ the afore mentioned. ~Meds: prednisone, Plaqu, Citracal D & Pain Meds, Compazine, phenergan, Iberogast.

Carolina

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Re: YES!!! GREAT NEWS!!
« Reply #5 on: November 01, 2013, 02:36:34 PM »
YAY - happy dance!

Validation is so heart warming.  You have the conditions, so a diagnosis validates you in ways that I didn't imagine earlier.

Heck, you've been dealing with this for 6 years already......now you have the 'certificate' or the 't-shirt' to go with it.

Hugs,  Elaine

AND a good doctor?  Praise be.

Female-Elaine,78-CVID-pSJS-IC-PN-CAD-Osteoarth-SFN-Knee/Shoulder Degeneration-SIBO-Act.Purpura-Tinitus-Meniere's-Hiatal Hernia-Achalasia-Hand Surgeries, UTI's-Braces/Walker-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-D-Mannose-NAC-Omega 3-Naltrexone-Esomeprazol

Cassi307

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Re: YES!!! GREAT NEWS!!
« Reply #6 on: November 01, 2013, 03:15:48 PM »
Good for you!

Hope that the rest of your treatment goes smoothly from here I .
Sjogren's, seronegative RA,  ckd, hyperparathyroidism, asthma,  osteoporosis,  Meds:  amlodipine, low dose Prednisone, calcium, sodium bicarbonate. Also, multivitamin and B complex

mistyrain

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Re: YES!!! GREAT NEWS!!
« Reply #7 on: November 01, 2013, 03:58:51 PM »
Good Gram..  that's great and it all came together quickly once you got into the system.  I surely hope it will truly help a lot, especially having everything in one place.  Way to go Grammad9  :) :) :) :) :) :) :)

grammad97

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Re: YES!!! GREAT NEWS!!
« Reply #8 on: November 01, 2013, 05:42:15 PM »
To add to the dancing. I got calls from both rheumy and pain doc clinics ( part of the same network of physicians) and have my consult appointments scheduled. One is next week and one the following! I never have had that happen before!
I wish all of you could get the awesome medical care I am getting.
The pessimistic side of me is waiting for the other shoe to drop.....( laaalaaalaaa not listening to that voice!)
Thankyou everyone for listening to me rant and whine. I so appreciate it.
I will keep you posted on how well the treatment plan is going in the future. For now my primary is happy to maintain my current RX regime with just a few minor tweaks. She put me on flexaril instead of carisporodol for bedtime and upped  my pain pills to two every 6 hours as needed. She said if the pain doc makes recommendations she will still be my prescriber and plan manager for my health.
Primary sjogrens, UCTD; osteoarthritis;osteopenia; HBP ;fibromyalgia;RX-plaquenil, butrans 20mcg patch ;flexaril;hydrocodone5/325;restasis, omega3, vit D, super B complex;s ;gluten free;lisinopril;moderate hearing loss

Kdmamm

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Re: YES!!! GREAT NEWS!!
« Reply #9 on: November 01, 2013, 05:43:14 PM »
Question: does having a specific diagnosis, ie sjogrens, help with insurance, disability, medical treatment...?

I know I was relieved to know the diagnosis but was just wondering about how it may help with other issues.

Ripvanann

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Re: YES!!! GREAT NEWS!!
« Reply #10 on: November 01, 2013, 06:10:59 PM »
This is awesome news Gram! Is this within Medicare? How wonderful it would be to have one doc to prescribe! You're right, kick the pessimist to the curb! I know it's hard... But you're on an upswing here, swing with it! Btw, love your avatar! =)

kdmamm,welcome! I would venture to say that a Dx would definitely help, especially nowadays. Do you know how to post topics? This might be a good one to begin. Look at the top right of the thread page and you can see where to post.

Primary SjS, Steroid Induced Cushing's Syndrome, RA, Thyroiditis, Hyperparathyroidism, Raynaud's, Autonomic & Small Fiber NLeuropathy, Fibro. Osteoporosis, & other fun stuff associated w/ the afore mentioned. ~Meds: prednisone, Plaqu, Citracal D & Pain Meds, Compazine, phenergan, Iberogast.

Skylar

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Re: YES!!! GREAT NEWS!!
« Reply #11 on: November 01, 2013, 07:31:56 PM »
LOL - Great news - shocking that we can be so happy to get this diagnosis - but I know what you mean -it has certainly taking you a long time to get that definitive diagnosis. I feel a little weird saying "CONGRATULATIONS"

grammad97

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Re: YES!!! GREAT NEWS!!
« Reply #12 on: November 01, 2013, 08:40:09 PM »
Ripvanann- yes I am on Medicare disability.  My diagnosis prior was enough to get me my status but knowing it IS what I and one other doctor knew is gratifying.
Kdmamm-I think symptoms and ability or disability is what determines approval I believe.
My MS markers that were documented played into my approval status.
skylar- its okay to say congrats.
We celebrate small and large victories and things others would find silly. I rejoice somedays being able to blow dry my hair out or sleep through the night.
Having a sense of humor is important when dealing with all of the yuck.
Primary sjogrens, UCTD; osteoarthritis;osteopenia; HBP ;fibromyalgia;RX-plaquenil, butrans 20mcg patch ;flexaril;hydrocodone5/325;restasis, omega3, vit D, super B complex;s ;gluten free;lisinopril;moderate hearing loss

SjoGirl

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Re: YES!!! GREAT NEWS!!
« Reply #13 on: November 02, 2013, 09:45:42 AM »
Ah I remember well the mixed feelings that turned to relief when I finally accepted my diagnosis (I fought it as opposed to my docs). I was able to create a care plan and team, adjust my lifestyle, and live with SjS as opposed to with the constant uncertainty that I might have something even worse.

Hooray for you and may your treatment go very well  :D
Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.

shay0425

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Re: YES!!! GREAT NEWS!!
« Reply #14 on: November 02, 2013, 10:13:18 AM »
That is such great news!!  I am so happy for you!  I am hoping to get officially diagnosed in December.