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Post by mountainma on Nov 27, 2020 12:12:04 GMT -6
As most of you probably know, the last 7 years have been a huge roller coaster of doctors and hospitals and tests for our oldest daughter. It has taken years for her to get diagnosed with POTS and Celiac disease, and she started getting better once she changed to a Celiac diet. Now, the last year her symptoms have steadily gotten worse and she is experiencing new, more severe, crippling symptoms.
Her doctor says she has a rare neurological and/or autoimmune disease and the POTS and Celiac are actually just symptoms of that. The next step is trying to figure out what she has. So far they have ruled out MS and mitochondrial disease.
Please pray. At this point I don't even know what to pray for--I guess healing, a correct diagnosis and effective treatment, strength for the mental and physical exhaustion we face after dealing with this issue for so long, funds to pay for all the doctor bills, faith not to get discouraged, etc. It's all so overwhelming but I know God is in control and he has a reason.
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Post by MammaMel on Nov 27, 2020 12:18:39 GMT -6
MM I have always and will continue to pray. One thought and you may have said this and I do not remember. Is she on disability? With as severe as her symptoms are she should qualify and that would help cover expenses. Plus if she is still disabled in 2 year, medicare will kick in. Which would help with the dr bills.
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Post by mountainma on Nov 28, 2020 13:08:16 GMT -6
We've looked into it, Mel. Trouble is, when she first got sick we had several quack/ignorant doctors diagnose her as "conversion" aka "in her head" or "looking for attention" etc. Healthcare in my state is awful, and if the docs don't know, they assume you're not really sick. When the ambulance took her to ER with stroke like symptoms, the doctor told us it was a migraine and sent us home, even though she couldn't even walk! With several incorrect diagnosis on her medical record, our primary care doctor says disability will not approve her until she can nail down the more serious diagnosis. So, that's why we have to shell out more $$ for more testing. Fortunately, our primary doctor is a good woman who will do anything she can to find out what's wrong. I pray we get some answers soon, even if those answers are not pleasant, because at least she would be able to get disability and relieve us financially.
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Post by ginakay57 on Nov 28, 2020 14:59:25 GMT -6
I'll continue to pray for her. It's so frustrating to know something is wrong but not know what. It's great you finally have a doctor who believes you.
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Post by mountainma on Jan 19, 2021 13:49:46 GMT -6
Thanks for praying. We are waiting to see a neurologist to have more testing. I'm trying to remain positive and downplay her fears, but her symptoms are getting worse.
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Post by eyeofthestorm on Jan 19, 2021 14:03:05 GMT -6
Prayers, mountainma
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oma
New Member
Posts: 9
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Post by oma on Jan 19, 2021 21:06:51 GMT -6
I haven't been here for a while so I'm just noticing your prayer request. My prayers are being added.
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