Author Topic: America is failing when it comes to rheumatic diseases  (Read 870 times)

SjoGirl

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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.

Maria3667

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Re: America is failing when it comes to rheumatic diseases
« Reply #1 on: November 01, 2018, 10:01:30 AM »
Hi Sjo,

Not only America, Europe, the world too...

Now it's becoming ever more obvious there's a definite hormone connection to Sjogren's, who are we typically treated by? That's right, rheumatologists! Whilst physicians learned about hormone levels in the body are called endocrinologists!

Looks like the whole medical community has been barking up the wrong tree...
« Last Edit: November 01, 2018, 11:06:33 AM by Maria3667 »
52. DES-daughter ('67), Lyme's ('98), GAD ('98), Sjogren's ('02), hypothyroid ('04), endometriosis ('14), osteoarthritis ('16), blepharitis ('18), frozen shoulder ('19). Pilocarpine, thyroid meds, 25mg quetiapine, 5% testosterone. Allergies: sodium hydroxide, nickle, methylisothiazolinone, latex

SjoGirl

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Re: America is failing when it comes to rheumatic diseases
« Reply #2 on: November 01, 2018, 10:30:52 AM »
Maria,

I never really thought about that, but there is no doubt that my issues started after menopause. Given that, I'm sure hormones played a role, just not sure what role or how they impacted me. I just know that I've been a mess and my current rheumatologist has been a godsend. Then again, an endocrinologist is the one specialist I have not see (nor an immunologist).

Thanks.

S
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.

Maria3667

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Re: America is failing when it comes to rheumatic diseases
« Reply #3 on: November 01, 2018, 11:39:39 AM »
I bet the majority of patients has not been to an endocrinologist. If they did, they would probably be sent right back because Sjogren's is not their speciality...

For me, problems began in my late 20'ies/early 30'ies when my periods suddenly dried up to barely a few drops monthly. My life changed dramatically. Beautiful sensations went dead (music, scents, being touched, libido, etc).

My gynaecologist congratulated me on having such minimum nuisance because most patients complained of the opposite. My sky high estrogen level he compared to being on BCP and thus surpressing blood flow. If only he'd tried to lower it! Fifteen years later 5 large uterine fibroids due to endometriosis had to be surgically removed...

When he finally measured my extremely low testosterone levels, he wouldn't prescribe anything for it...

Desperately I turned to naturopaths and discovered by trial and error which hormones can alleviate symptoms. My sensations were (partially) raised from the dead  :)

Rheumatology is viable route, which I deterred from after being offered drugs with dangerous side effects. But for some people it works. Maybe even better if combined with hormone replacement therapy? Might be worth a try...
« Last Edit: November 01, 2018, 02:53:40 PM by Maria3667 »
52. DES-daughter ('67), Lyme's ('98), GAD ('98), Sjogren's ('02), hypothyroid ('04), endometriosis ('14), osteoarthritis ('16), blepharitis ('18), frozen shoulder ('19). Pilocarpine, thyroid meds, 25mg quetiapine, 5% testosterone. Allergies: sodium hydroxide, nickle, methylisothiazolinone, latex

Deb 27

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Re: America is failing when it comes to rheumatic diseases
« Reply #4 on: November 01, 2018, 01:47:07 PM »
Well, that's a sad state of affairs for us, isn't it? They are tough diseases to treat. It really helps having forums like this to share treatments, ideas and success stories.  A lot of us are having to do our own detective work. Nobody else is going to care as much about our disease! It just doesn't seem like that many doctors are passionate anymore about helping patients.
Sjogrens and RA,  Morphea (skin scleroderma), Hashimoto's, 
Nexium, synthroid, HRT, plaquenil,  Restasis, Maxi-tears supplement, L-glutathionne, CoQ10, folate, trintillex,  multi vitamin. lisinopril.

Maria3667

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Re: America is failing when it comes to rheumatic diseases
« Reply #5 on: November 01, 2018, 03:05:46 PM »
Hi Deb,

You hit the nail right on the head! We have to be our own detectives...

It saddens me the medical field is so slow to progress forwards. Already in the initial studies scientists discovered something was wrong hormonally. Pubmed has studies dating back to the 1980's (and maybe earlier) proving this...

Dr. Rupuano sums is up precisely:

"In menopause, the combination of aging and hormonal changes gives you a double whammy effect in dry eyes."

There you go, and he hasn't even mentioned dry mouth yet.

Whole report:  http://www.ophthalmologytimes.com/article/perimenopausal-patients-increased-risk-dry-eye?qt-resource_topics_rightrail=0

52. DES-daughter ('67), Lyme's ('98), GAD ('98), Sjogren's ('02), hypothyroid ('04), endometriosis ('14), osteoarthritis ('16), blepharitis ('18), frozen shoulder ('19). Pilocarpine, thyroid meds, 25mg quetiapine, 5% testosterone. Allergies: sodium hydroxide, nickle, methylisothiazolinone, latex