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Dr. Diana, both a doctor (therapeutic optometrist), and a recovered POTS and ME/CFS patient, offers help and hope for POTS, Dysautonomia, Ehlers-Danlos syndrome, Chronic Fatigue, Chronic Lyme, vascular abnormalities, Fibromyalgia, and Multiple Sclerosis. Dr. Diana is now working full time at POTS Care.

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Reply To: Hi again! I have an update, and some questions.

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › Hi again! I have an update, and some questions. › Reply To: Hi again! I have an update, and some questions.

August 2, 2015 at 4:12 pm #5586
SaraC
Participant

I believe it is a CSF leak, like you describe. When I watched your YouTube videos that was a HUGE symptom that stood out to me. I’ve been carrying tissues around with me everywhere for a couple years. At first I thought, “Oh, it’s allergies,” and I’d take a zyrtec and write it off. Then I’d think “Oh, it’s just cold out,” and blame it on the weather (I live in MI, weather is highly unpredictable here lol). Nothing I did made the clear liquid stop running, though. I read a news article about a man in the UK who’d had a runny nose for years, and doctors found a tiny hole in his nasal passage that was leaking CSF, and I freaked out a little about that haahaha.

But it’s not a coincidence that my runny nose is often accompanied by a full feeling in my head and will progress to an occipital headache after a couple weeks. My doctor hasn’t even looked into it, I’m sure. Before I saw him, I thought he was going to look into EDS and the diagnostic criteria for it, and boy was I wrong. It’s still another two weeks before I see him again. I’m staying hopeful that now he’s seen I don’t have lupus or rheumatoid arthritis, he’ll take me more seriously.

I have this issue with doctors (and many others) where I look like I’m 17, but I’m actually 31, so they see this young, healthy looking girl and think, “There’s no possible way she knows what she’s talking about, she’s a child.” It’s frustrating. I’m glad I have a couple weeks between now and my appointment so I can get my evidence together into a neat little folder and go in and hit him with some hard science. 🙂

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