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Post by scrappintoee on Nov 2, 2017 23:09:46 GMT
Hi, I'd appreciate hearing from peAple who've had this or know someone who does. I've been reading that diagnosing it is tricky---which makes sense, since the symptoms can be related to MANY other things.
Did it take a long time to be diagnosed? What helps/helped you? TIA
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Post by mom2samlibby on Nov 2, 2017 23:23:16 GMT
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mlana
Pearl Clutcher
Posts: 2,523
Jun 27, 2014 19:58:15 GMT
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Post by mlana on Nov 3, 2017 0:00:17 GMT
My DD developed chronic viral fatigue after her case of mono was misdiagnosed. Rather than the 3 months or so it takes to recover from mono, she was ill for 2+ years. At her dr’s insistence, DD applied for and received a special circumstances exemption thru the Disabilities Act for college. She could not have done the first 2 years without it. She was recovering by the time she left for China or she would have deferred that year.
Five years after she first contracted mono, she is much better. She is still having headaches, but they are much less severe. Her fatigue is now more likely to be caused by other health issues. she considers herself cured, but her drs have warned her that the mono may reoccur and may be as devastating as it was the first time. She’s optimistic, though.
Marcy
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mlana
Pearl Clutcher
Posts: 2,523
Jun 27, 2014 19:58:15 GMT
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Post by mlana on Nov 3, 2017 0:11:44 GMT
Sorry, I missed part of your question.
Her mono was misdiagnosed for viral meningitis. After the lumbar punch came back negative, her very new pediatrician threw up his hands and blamed her mental health. He was sure the MASSIVE dose of antibiotics they gave her at the time of the punch would wipe out pretty much anything, so any remaining symptoms HAD to be in her mind, right? DD was so embarrassed, she wouldn’t tell me just how bad she was feeling. I finally convinced her to see another dr and that’s when she got some relief. Not only was she diagnosed with a now-past case of mono, she was told it had become CVFS. This dr also tested DD for thalassemia and found that she is a carrier for both A and B minor. Further testing revealed this had caused her immune system to be somewhat weak. Suddenly we had an explanation for the number of illnesses she’d had over her short lifetime.
Once the dr knew what to look for, the diagnosis was pretty quick. No real treatment except rest and staying away from sick people. The post punch antibiotics blew out her gut bacteria, so we have tried to rebuild it via kefir, kombucha, and Jun. It’s been fairly successful, though it takes a beating anytime she has to go on an antibiotic.
Marcy
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pudgygroundhog
Pearl Clutcher
Posts: 4,643
Location: The Grand Canyon
Jun 25, 2014 20:18:39 GMT
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Post by pudgygroundhog on Nov 3, 2017 0:27:25 GMT
Hi, I'd appreciate hearing from peAple who've had this or know someone who does. I've been reading that diagnosing it is tricky---which makes sense, since the symptoms can be related to MANY other things. Did it take a long time to be diagnosed? What helps/helped you? TIA I have a friend who I would consider an expert on the topic. I sent her a note to ask if she had a link for a list of resources. I will share any info I get from her. ETA: My friend sent me this link, which has a list of resources. My friend said if she can help in anyway, I can pass along her contact info. ME Action
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Post by grammadee on Nov 3, 2017 3:50:43 GMT
Really difficult to diagnose a whole set of autoimmune disorders. And even when a label is attached, effective treatment seems to vary from one sufferer to another. My dd had a terrible time getting medical professionals to really LISTEN to her and believe the symptoms are real. She is now on thyroid meds, and that seems to be making the fatigue manageable.
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Chinagirl828
Drama Llama
Melbourne, Australia
Posts: 6,486
Jun 28, 2014 6:28:53 GMT
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Post by Chinagirl828 on Nov 3, 2017 8:56:00 GMT
My sister suffered from it during (what should have been) her last year of high school. It took several months to get the diagnosis and in the end it was a lady who practiced Chinese medicine who provided the answer. She basically missed the entire last year of school with her class due to CFS which would see her spend most of her days sleeping.
She was given some Chinese herbal pills which she took daily for close to three years. If she skipped a day we could see a noticeable difference in her. She was able to cut back on the pills and eventually stopped taking them. She now leads a normal, busy, lifestyle and it's as if the CFS never happened.
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Post by gailoh on Nov 3, 2017 9:57:31 GMT
btt
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Post by Merge on Nov 3, 2017 13:32:01 GMT
I had a tentative diagnosis of CFS several years ago. It's more likely my various issues are autoimmune related, but regardless, I feel best when I'm eating well and getting a little exercise - even just a quick walk around the block. I'd encourage anyone suffering from constant fatigue to clean up their diet, while continuing to seek medical advice, of course. I do best when I limit or eliminate simple carbs and sugar.
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Post by scrapmaven on Nov 3, 2017 16:01:54 GMT
I had a rare form of mono when I was in college. At the time I was told that it would likely come back to bite me. It did and I have CFS. It's likely also a part of my other diseases. It's often considered a trashcan disease. That means that it's a diagnosis made when everything else has been ruled out. Don't just accept it as a diagnosis. Make sure that they've tested for everything, first and that includes a thorough sleep study. Mine will be lifelong, but it is a disease that you can manage in most other cases.
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