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Katybug

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  1. Hyperadrenergic POTS and hot red ears

    in Dysautonomia Discussion

    Posted · Edited by Katybug

    Hi folks. Just wanted to pipe in that there is not one test that is definitive for ruling MCAS out. It is very complicated to diagnose. Here is the most comprehensive paper I've found on MCAS. It includes the various and sundry ways it is diagnosed as well as an explanation as to how and why the diagnosis is difficult.  The tables and figures have a wealth of information in them. 

    http://www.wjgnet.com/2218-6204/full/v3/i1/1.htm

     

  7. Anybody else have an intractable migraine?

    in Dysautonomia Discussion

    Posted

    Update: I am having very good results from using my Cefaly device. Truth be told, I'm a little addicted to my treatments. I look forward to them everyday. It has not broken my migraine but it has reduced the severity significantly. I have been using much less medication to control the pain. When I do have to use meds, they are more effective.  I am looking forward to seeing how much more improvement I will see with continued use. 

     

    I did have a problem with my unit and I learned 2 things: 1) the customer service from the company is great, and 2) a week without my treatments showed me just how much they were helping me because the last 4 days the pain was awful. My new unit just came today and I just did a treatment and it's amazing how much better I feel already.

  14. New Members Sept 25 - Oct 11

    in Dysautonomia Discussion

    Posted

    Wowza!! We've had a lot of new members join us recently!! While I'm sorry they have a need to be here, I am so happy that they have found our beautiful community!  Please join me in welcoming all of our newest members:

    Adjusting1.            helena87

    Cinnamon.             Potsie Girl

    Ayowen.                 DebX

    Pearlsgirl1.            Daniel

    Laura B.                 shart33 

    Terri Snyder.         Rhondadela 

    Erin.                        Fiona

    Jack Morrison.     Tabitha

    Massimo.               Abigail 

    Jessicarose95.     John213

    Lisa S.                    Dee Dee

    Bopler.                   Lou M

    Apotsie.                 Jenniy122 

    Oldpotsie 

  17. How long have you had pots?

    in Dysautonomia Discussion

    Posted

    I've been seriously I'll from POTS since 2007. However, I now know that I had subtle symptoms of autonomic dysfunction and EDS complications all my life. Nothing was disabling enough to stop me or make a doctor really put it all together until 2007. Then it took 3 1/2 years to start figuring out what the proper diagnoses really were.

  19. Checking for auto immune

    in Dysautonomia Discussion

    Posted

    There are many different tests for autoimmune diseases. ANA is just one of them and it is a "non-specific " test meaning that it indicates autoimmunity but not a specific disease. Some autoimmune diseases have specific autoantibodies that can be detected such as myositis. (Here's an example of this: http://www.myositis.org/learn-about-myositis/diagnosis/antibody-testing)

    There are other non-specific tests as well, C reactive protein (CRP) is an example of one. CRP is an inflammatory marker so it is not specific to autoimmunity but is another clue that there may be autoimmune issues if CRP is elevated. It can be elevated for other inflammatory reasons as well. SS-A is another example of a non-specific autoimmunity test. (Here's an explanation of SS-A: http://www.mayomedicallaboratories.com/test-catalog/Clinical%20and%20Interpretive/81360 )

    I hope this helps your understanding of the different testing. 

  20. High BP and Blacking Out Moments of Time? Scary.

    in Dysautonomia Discussion

    Posted

    I do think you should mention this to your doc since it's a new symptom.  

    I have this issue daily. There are many things I forget about conversations I've had with people, I have no name recall for new people I meet anymore, I forget story lines to shows, I can't remember what I read in a book just a few minutes after reading it, I know I drove myself from point A to point B but I have no recall of the drive (this one scares me the most because it makes me wonder if I was paying attention while driving.). It was scary at first but I've gotten used to it. My long term memory is still perfectly intact, it's my short term memory that is a problem. 

    Before I was dx'd with POTS, this was so concerning they sent me for neuropsychiatric testing to make sure I didn't have early onset dementia (which I don't. ) My POTS neuro says it is from the POTS and likely had to do with cerebral perfusion affecting the memory center in the brain.

    I know it's scary (and you should consult your doc) but it may very well be just another highly annoying symptom that thankfully isn't dangerous.

  21. School

    in Dysautonomia Discussion

    Posted

    When I was in college, I had a semester where I was struggling g due to depression. I asked my professors for private meetings and I was honest with them about what was going on. All five of them worked with me to help me get through the class work. A couple extended deadlines on assignments for me, one actually excused one whole assignment (which I didn't ask for but was happy to take them up on the offer.) The two others had attendance requirements for class which they waived for me with a note from my counselor confirming my diagnosis. They just required my attendance at exams and that I turned in my assignments.  

    There is no guarantee how the professors will react but what's the harm in having an honest conversation. The worst they can say is that they don't care and won't make any consessions. Or they could end up being very compassionate and find ways to help you. 

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