Author Topic: Tests are all in, waiting, waiting, waiting  (Read 2752 times)

anita

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Re: Tests are all in, waiting, waiting, waiting
« Reply #15 on: May 08, 2013, 06:55:04 PM »
As for Irish's comment's.  This is why pre-meds are important and I mentioned the solu-medrol, benadryl etc.  I also use to get IV fluids hooked up first and run before IVIG started...just for the very reason Irish said...hydration.   But don't drink soda, coffee or tea.  Caffeine with dehydrate you and increase risk of problems.   Water or gatorade is best.

As for PN pain:  I tried all the anti-seizure meds (neurotin, lyrica, etc).  I also tried cymbalta...made me very sick.  My only options at present is low doses of percocet.  not very effective with nerve pain, but it takes the edge off.  I can't remember the last time I was pain free...and don't imagine I will ever know what it will be like again. 

My blood work has always been negative, but my lip biopsy showed Sjogren's at end stage.  Diagnostics have a LONG way to go and many will fall through the cracks without treatment because of this.  I feel for so many that post here without answers and bouncing from doctor to doctor.  I was not diagnosed for 12 years...that is just sad. 

My CVID will be checked again at the end of this month since I keep getting sick.  I'm sure levels are low, but I don't know if I'm ready to  try IVIG again.  Especially now that I have diabetes insipidus on top of everything else...and it's not controlled yet.   I also have horrible reactions to all antibiotics which is presenting yet more problems.  Things are very up in the air right now and I have to address one thing at a time.

Why is your husband against it?  I'm curious about his thoughts behind his feelings?

Are you having recurrent infections?
52 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (CVID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Cardizem, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Fentanyl, Percocet, Zofran

Carolina

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  • —if it ain't one thing, it's another." Roseanne R.
Re: Tests are all in, waiting, waiting, waiting
« Reply #16 on: May 09, 2013, 05:51:49 AM »
Dear Anita,

I just added Turmeric to my routine, and I do believe it is giving me some relief from pain.

My severe Osteo Arthritis is the worst source of pain, complicated by the other conditions that are inflammatory, no doubt.

i cannot take any drug that is opioid (has any relationships to codeine, morphine, Hydrocodone, Percocet, Vicodan,  on and on, plus some others like Talwin, Darvocet).  So thank god for Aleve, Cymbalta, and Tylenol.  I was send home from knee and hand surgeries on Tylenol.

Well now I've learned about Diabetes Insipidus.  What an education I'm getting.  Of COURSE I thought it must be some early form of Diabetes Mellitus.  Now I know the difference.  I sorry you have to add to your woes.

My husband?  Well, he sees that I'm 'sick' and I've had septicemia, and abscesses, and three months on an antibiotic with recurrence of the infection within two weeks of stopping, a four year fungal infection on the bottoms of my feet, and of course sinusitis and shingles.

BUT, no hospitalizations (a couple of ER runs), and no IV antibiotic, well twice but he forgets.

Basically he thinks I am a hypochondriac and also have 'first year medical student syndrome' where everything I read about I think I have.

Which isn't true.  But we've been married almost 51 years, and his opinion of me isn't going to change.

I do think that being seriously ill from birth and as a child, with eczema, boils, ear infections, respiratory infections, lung scarring, allergy tests and immunizations back in the 50's does make me more 'aware' of my health, probably. 

Back then there were no antihistamines or cortisone.  It was coal tar and 'don't scratch'.  There were antibiotics, or I wouldn't be around today, no doubt.

And treating 'heartburn' for two years, only to find out that it was unstable angina and that my Left Anterior Descending Artery (the widow maker) was 95% blocked, did jolt me a bit. Three angioplasties and two stents were placed the day after the condition was found.

That year I went into surgery 6 times, for various reasons, and marked the beginning of the past 14 year saga one thing after another!

Culminating with an out-of-the-blue discovery of Immune Deficiency.  I did procrastinate for 18 months or more after the ID was identified.

It has been confirmed with many additional tests, and I would have begun the IVIG by now, but I wanted him to meet with a truly outstanding research Immunologist Physicianbat Duke.  She has been consulting with my own Immunologist all along.  But needs HE her input to believe I need this IVIG.

My husband is a research Immunologist, but NOT a Physician.   He taught for 25 years at  Medical Center and did basic research in Immunology, some of which influences current practices and thinking in immunology.  He knows about immunology.

And perhaps, just perhaps, she will decide I should wait!   I'm open for whatever happens.  And I'm mentally prepared now for IVIG, I think.

Knowing of course that you can never really be prepared for reality.

20 more days!

Hugs

Elaine
« Last Edit: May 09, 2013, 10:39:53 AM by Carolina »
Female-Elaine,76-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-Knee/Shoulder Degeneration-SIBO-Intertrigo-Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-Omega 3

quietdynamics

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Re: Tests are all in, waiting, waiting, waiting
« Reply #17 on: May 09, 2013, 08:14:36 AM »

A friends husband once spoke to me about a concern...

My advice to him was...when your boss comes into your office do you stop what are doing, look at him and give him your undivided attention?
You love your wife...doesn't she deserve at lease the same?

Difficult when family thinks they "know" our bodies by hearing snippets...we talk and instead of listening they are off forming their own opinions...before we have crossed our "t's" and dotted our "i's".

Having family medical professionals: is it a matter of the shoemakers children who had no shoes or too many shoes?

Perhaps they do not want major disease issues to touch the home, the inner sanctum?
Mothers Day is coming up and I hope it is all about "Mommy"....put the other "stuff" in a box ...it'll rest.



Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea, Livedo reticularis,

"You can't have a positive life with a  negative mind"

Carolina

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Re: Tests are all in, waiting, waiting, waiting
« Reply #18 on: May 09, 2013, 10:42:14 AM »
Wise word, quietdynamics.

Mother's Day and his 74th birthday are close together as always, his bd is the 10th, Mother's Day is the 12.

We're having a family dinner out on the 10th.  I'll get him another gift (I gave him one already).

And we'll focus on the three grandchildren, HIS birthday and the mothers.

Hugs

Elaine
Female-Elaine,76-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-Knee/Shoulder Degeneration-SIBO-Intertrigo-Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-Omega 3

quietdynamics

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Re: Tests are all in, waiting, waiting, waiting
« Reply #19 on: May 09, 2013, 11:08:51 AM »

Carolina...LOL

Great...that should free up Sunday for YOU to do whatever YOU want to do on Mothers Day.

(I always thought Mothers Day was when we Moms should get outta town!!!)
Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea, Livedo reticularis,

"You can't have a positive life with a  negative mind"