"Begin today and write in it your goings and comings, your deepest thoughts, your achievements and your failures, your associations and your triumphs, your impressions and your testimonies. I promise you that if you will keep your journals and records, they will indeed be a source of great inspiration to you, each other, your children, your grand-children and others throughout the generations. Remember, the Savior chastised those who failed to record important events." --President Spencer W. Kimball

November 21, 2012

RA Call - Results

Ova finally saw the rheumatoid specialist on November 7th, that was a Wednesday.  The doctor told us that he had a conference that he had to attend and he wouldn't be able to call us with the results from the tests, blood work and x-rays until the next week Wednesday. 

Well Wednesday came and went and Thursday and Friday passed too.  I was trying to be patient because I knew they'd been out of the office for a conference and they were super busy....but I had waited long enough to find out what was wrong with my husband and I just couldn't wait anymore.  The weekend passed and on Monday morning I called to get the results.  The doctor was not available when I called, but his assistant assured me she would get with him and they would call me back asap.  The next morning, I was on my way home from working my graveyard shift and my phone rang and it was the rheumatologist.  He apologized for not calling me with the results but the truth is that he had met with 2 other rheumatologists in his office to go over Ova's case, and none of them knew what was wrong with him.  They were stumped.  He explained to me that his symptoms are very rare, the type of pain he's experiencing is not common and they did see something on the x-ray that concerned them but they just weren't sure what it is.  He doesn't have gout, he doesn't have rheumatoid arthritis, he doesn't have lupus.  He obviously has osteoarthritis, which is just wear and tear of your bones, but that's normal and everybody has a little of that.  He has some other underlying issues that are causing his immobility and pain and they couldn't seem to figure out what it was.

Dr. Kunkle, the rheumatologist, told me that he had called a meeting with the Rheumatology board of Utah just to discuss my husband.  He told me that they would discuss the results of his blood work and x-rays and his history and try to come up with a plan of action.  The meeting he scheduled will be held next Wednesday and he's going to call me with the results on Thursday.

Not exactly the news I wanted to hear.  :'(

They started him on 5 different medications at our appointment on the 7th, and honestly, they seem to be helping.  He still can't walk normally and he's still in pain...but he can get around with a walker.  The mere fact that he's able to put any pressure at all on his feet is a huge improvement.  Dr Kunkle told me to go ahead and get him scheduled with the physical therapist and to get him moving as much as we can.  His immobility is adding to his pain by making the joints stiff.....and then the stiffness makes him not be able to move....it's a vicious cycle.

I cried all the way home after that phone call.  I just felt so hopeless.  We had waited months and months to see a specialist so we could find out what the heck is wrong with him, and now the specialists are telling me that they don't know what's wrong.  They were my last hope and I felt like they shot my hopes down.  I'm grateful that they're not just telling us they don't know what's wrong and pushing us aside....that they're actually trying to figure it out...and they're meeting with other specialists to find out.  It's just so frustrating.  And I'm so tired.  And I miss my husband.

As sad and heartbroken as I was with the call I got, I can't help but think about my dad's special conference and the apostalic blessing that Elder Holland left of all of us.  He blessed Ova by blessing all those who were not in attendance that we have been praying for.  I took that blessing he gave as if he was directly talking to me and directly talking about Ova.  I know he'll get better, I do have faith in that, it's just hard to go through it.  It's hard to see him in so much pain and it's hard to have to do everything by myself that we would normally be doing together.  I will continue to pray.  I will pray for his relieve and that the rheumatology specialists will be able to pin point the problem and fix it.  It's hard not to throw pity parties for yourself when you're faced with tough situations, but I always try to put more focus on my blessings than my trials.  I am greatly blessed.  There are so many people who are going through so much worse.  People who have lost their spouse.  I haven't lost him, he's still here, and for that I'm so so grateful.  I know we'll figure it out and get past it.  The Lord must have some wonderful blessings in store for our little family.  I pray for patience and understanding that I can learn what I'm supposed to and that I can continue to keep my focus on the positives.  And I pray for good news next Thursday!

Here are the results of the tests they conducted:

FOOT ARTH BILATERAL

IMAGING RESULTIndication: E. arthropathy.

Findings/impression: 3 views of both feet show marked periarticular 
osteopenia. There is 
apparent ankylosis of several TMT joints. Periosteal new bone/enthesopathy is 
noted at 
both medial naviculars. There may be a marginal erosion in the right medial 
navicular as 
well as irregularity of the naviculocuneiform joints of the right foot that 
appears 
eroded.

There are prominent first metatarsal bunions without appreciable erosion or 
tophi. 40? of 
hallux valgus is noted on the right. Both second metatarsal heads appear 
hypertrophic. 
There is a mild Morton's foot conformation bilaterally.


HAND ARTH 3 OR MORE VIEWS BILAT


IMAGING RESULTIndication:  arthropathy.

Findings/impression: 3 views of both hands and wrists show previous right 
scaphoid 
resection and carpal fusion with a dorsal four quarter staple. There is joint 
space loss 
of the right middle and both ring finger PIP joints with apparent bare area 
erosions of 
the right ring finger proximal phalanx in particular. There is marginal bony 
spurring at 
the capsular attachment of the left index proximal phalanx at the MCP. The 
left wrist 
joints are preserved. No tophi are shown.

KNEE XRAY BILATERAL

IMAGING RESULTIndication:  arthropathy.

Findings/impression: 3 views of both knees shows severe osteopenia with severe

tricompartmental osteoarthritis. There are no erosions. There are no visible 
tophi. Small 
effusions are noted.

Rheumatoid Factor (RF) Level

Component Results

ComponentYour ValueStandard RangeUnits
Rheumatoid Factor130 - 14IU/mL


Cyclic Citrullinated Peptide Antibody

Component Results

ComponentYour ValueStandard RangeUnits
CYCLIC CITRullinated PEPTIDE AB, IGG30 - 19Units
INTERPRETIVE INFORMATION: Cyclic Citrullinated Peptide
Antibody, IgG

19 Units or less ................... Negative
20-39 Units ........................ Weak Positive
40-59 Units ........................ Moderate Positive
60 Units or greater ................ Strong Positive

Anti-cyclic citrullinated peptide (anti-CCP), IgG
antibodies are present in about 69-83 percent of patients
with rheumatoid arthritis (RA) and have specificities of
93-95 percent. These autoantibodies may be present in the
preclinical phase of disease, are associated with future RA
development, and may predict radiographic joint
destruction. Patients with weak positive results should be
monitored and testing repeated.

Uric Acid Level

Component Results

ComponentYour ValueStandard RangeUnits
URIC ACID6.83.5 - 8.5mg/dL

Comprehensive Metabolic Panel

Component Results

ComponentYour ValueStandard RangeUnits
SODIUM137136 - 144mmol/L
POTASSIUM3.73.3 - 5.0mmol/L
CHLORIDE107102 - 110mmol/L
CO22020 - 26mmol/L
BLOOD UREA NITROGEN68 - 24mg/dL
CREATININE0.880.72 - 1.25mg/dL
GLUCOSE12664 - 128mg/dL
CALCIUM9.98.4 - 10.2mg/dL
TOTAL PROTEIN8.66.5 - 8.4g/dL
ALBUMIN4.13.5 - 5.0g/dL
TOTAL BILIRUBIN0.70.2 - 1.4mg/dL
ALKALINE PHOSPHATASE8038 - 126U/L
AST8716 - 40U/L
ALT1145 - 60U/L
ANION GAP108 - 14mmol/L

Complete Bloodcell Count/Platelet Auto Differential

Component Results

ComponentYour ValueStandard RangeUnits
WBC8.563.20 - 10.60k/uL
RBC5.354.69 - 6.07M/uL
HGB14.314.6 - 17.8g/dL
HCT43.940.8 - 51.9%
MCV82.077.8 - 94.0fL
MCH26.726.5 - 32.6pg
MCHC32.532.7 - 36.9g/dL
RDW13.410.8 - 14.1%
PLTS359177 - 406k/uL
MPV8.15.9 - 9.8fL
SEG %62.944.0 - 76.0%
MONO %5.24.0 - 8.9%
EOS %5.40.0 - 6.0%
BASO %1.20.0 - 1.7%
ABS SEGS5.41.3 - 7.0k/uL
ABS MONO0.40.2 - 0.7k/uL
ABS EOS0.50.0 - 0.4k/uL
ABS BASO0.10.0 - 0.1k/uL
LYMPH %25.314.7 - 42.6%
ABS LYMPH2.20.8 - 3.1k/uL
 

4 comments:

Melissa said...

Wow, I have been awhile for awhile. I was just reading up on the last 100 posts. I am so sorry that even the specialists have no idea. I will be keeping all of you in our family prayers. I hope relief and answers will come soon. We sure love you guys!
By the way, the pictures of your children are darling! They are so beautiful! They have a lot of you in them!!! Hang in there! I love ya!!!!

Siu said...

Awww, keep your head up sis!! Hopefully you guys will figure out what's wrong & Ova will get better quick!! Love you sis!!

pwincessdi said...

This concerns me, and I am praying for your family. Love u guys tons!!!

Aki said...

You are amazing & totally inspiring to me Monica. I know it's hard but keep your head up. Love ya =)