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Wed, Sep 11 7:02pm · Undiagnosed and don’t know where to go next in Autoimmune Diseases

Hi @becsbuddy and @lioness

I have been experiencing symptoms for 9 months, however there have been several "red herrings" if you will–they believe I had mono at the start of it all, even though I had it already, and I also had staph in my lungs during this. I have seen several pulmonologists and they do not believe my symptoms are lung related. I do have some mild inflamation in the lungs, but I was told this is likely to be asthma and I have been prescribed three inhalers, two nasal sprays, and one pill. None of those have made a difference. However, I have recently gotten some relief from gastroenterology at Mayo. I saw a local gastroenterology who, without examining me, told me that this was all in my head. Luckily, I was fortunate enough to see Gastroenterology at Mayo and they found a pelvic floor disorder, specifically the anal sphincter not relaxing. I got into a pelvic floor pt program ans it has really helped with my abdominal pain and shortness of breath. I have also found a new gastroenterologist at home, and he thinks functional dyspepsia may also be at play. Although I have many other symptoms, any relief is welcomed! I also am returning to Mayo next week and they will be repeating a lot of the gastroenterology tests that I had performed locally.

Julianne

Fri, Sep 6 6:05pm · Undiagnosed and don’t know where to go next in Autoimmune Diseases

Have you considered seeing someone who specializes in autonomic disorders? I am a white female in my late 20s and this sounds similar to me. That is the direction I am headed in. I also had mono more than once. My major issues are dizziness, excessive sputum production causing me to choke, spitting up stones, abdominal pain, shortness of breath, and I was diagnosed with neurocardiogenic syncope in the past. I recently saw a neurologist who thought I might have POTS but couldn't say so definitively because my tilt test results were borderline and the test performed while I was on propranolol. I also share these symptoms of yours: – joint pain
– joint stiffness
– brain fog
– trouble concentrating
– extreme fatigue
– dizziness
– pain in my left side, about where my spleen is, but doctors say my spleen is not enlarged
– pain in my ribs sometimes when I breath that lasts a few hours
-numbness and tingling in my hands and feet at times and especially when lying down.
i have mild dermatographia too but I was told that was nothing more than annoying. As a child the hives things happened to me too if i sweat. I currently get night sweats too.

Hope your situation improves!

Fri, Sep 6 5:32pm · POTS - postural orthostatic tachycardia syndrome in Heart Rhythm Conditions

Hi all, is anyone familiar with POTS and if so how has your experience been diagnosing and treating it?

I was diagnosed with neurocardiogenic syncope several years ago and treated with propranolol. This worked miraculously for me until about 8 months ago when I started having fatigue, dizziness, gastrointestinal issues, pain, and vision issues. I saw a neurologist today who specializes in autonomic conditions, and she said that it sounded like POTS. I had a tilt test recently which showed a few abnormalities, but the test was performed while I was still taking propranolol. I was told that this may have skewed the results.

Any comments are much appreciated!

Thu, Aug 1 12:42pm · Getting off Klonapin (klonazapam) in Depression & Anxiety

I am in my late 20s, and I was prescribed klonapin for anxiety, depression, and difficulty falling asleep due to mind racing. At that time I was 18. It definitely helped me sleep, but I had difficulty waking up in the morning (also slept through fire alarms). When I was taking the medication, I noticed that I felt a lack of emotion as if I was numb to things around me. I felt like a robot just coasting through life. At that time I was prescribed one whole pill (can't remember the dosage). My doctor was okay with me weening myself off of the medication, so I cut the pill in half, then eventually into quarters, and eventually I stopped taking it. While weening off I experienced withdrawls and experienced some mood instability, but that was temporary. It's been years since I have had it. So it can be done! Plus I was probably 20 at that point so if I could do it I believe an adult could definitely do it. Naturally I can only speak to my experience, but I feel like I got my zest for life back after coming off of the medication. I now take paroxetine (paxil) which can make you sleepy so it helps with anxiety at night and seems to fill the void.

Obviously Klonapin has huge benefits, and everyone reacts to it differently, so definitely talk to a doctor about coming off of it. But just know it can be done!
GOOD LUCK!!!

Thu, Aug 1 12:21pm · Left chest lower rib cage pain moving upwards in Digestive Health

Hi @ak999, sorry about your experience — I am 27 and am having/had a similar experience (minus the lesion). I can only speak to my circumstances, but I have been dealing with abdominal pain, shortness of breath, and some other symptoms since November (started complaining in January). I went on omeprozol and then pantoprazol and nothing helped. I stopped drinking coffee and highly acidic foods, again to no avail. No alcohol since January. I had endocscopy, esophageal manotremy, a barium swallow test and a PH test and the Gastorenterologist in my home city told me that this was all in my head and to stop focusing on myself.

HOWEVER, I was fortunate to see a doctor at Mayo last month, and she sent me for some tests that showed I have a problem with my pelvic floor muscles where the anal sphincter is not relaxing when it should, causing fecal matter to build up in my lower abdomen. She believes this may be causing my abdominal pain even though my pain was/is up behind my ribs. To help resolve the issue she told me to take miralax daily and to participate in physical therapy geared towards my particular evacuation disorder. It took some time for me to get in with my local pelvic floor PT program, so I just had my first session this week. I am optimistic that the program will help. Additionally, I have found that the miralax has helped a little and that my abdominal pain is already reduced. Not sure if you experience constipation, but if so it may be something to look into. This was something that my local doctors (many, many doctors) had never mentioned to me so I wonder if it could be the case for you as well.

Finally, over the past two months I have also been doing acupuncture and it has helped a lot with pain management so it may be worth considering for you.
Best of luck,
Julianne

Thu, Jul 25 1:53pm · Altered Color Perception in Eye Conditions

Wow I just started looking at the study–very interesting. A little overwhelming, but it is relieving to know there are things I can do now to lower my risk. I definitely need to incorporate the dietary elements (although I am average/slender, I have a sweet tooth and I don't eat seafood so I am guessing I don't have a lot of the omega 3s in my diet). I wore the sleeping mask the past two nights and have not experienced the color shifting so that is good. I will keep you updated! Thank you everyone for your help and thanks for the various resources! I definitely will read them more closely over the weekend.

Tue, Jul 23 11:30am · Altered Color Perception in Eye Conditions

Thank you for taking the time to write all of this and answer my post! I purchased a sleep mask so I will test that out and see if it works. At first I did think that maybe there was some link to the light, because my room has great sun exposure. However, I slept at my grandma's house in a very dark room and still experienced the problem. I wonder if, as you said, the long term exposure made my couple of nights in darkness irrelevant. I also recently took one of those send-away ancestry and health DNA tests. My results showed that I carry the gene for AMD, which is not shocking to me because my grandmother and my great aunt both have macular degeneration. I will look into the supplement you mentioned, too. Thanks for your help!

Fri, Jul 19 2:15pm · Altered Color Perception in Eye Conditions

Thanks for inviting those individuals! I am interested to see if any have comments based on their experiences. I experienced it again this morning, this time something white appearing green. Yesterday, upon opening my eyes after accupuncture, I experienced black squiggles on a white wall. Like in the other instances, the color adjusted within a second.