Are some of us misdiagnosed? EDS, POTS, MCAD, Mito? Plus request for contest votes....

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by marti_zavala, Apr 28, 2014.

  1. marti_zavala

    marti_zavala Member

    Dear Group:
    I have not been here in years so many of you may not know me. I have been active at CFSFM_Experimental Yahoo group and am the current moderator there. This is a request for help in a contest to win a mobility van (no purchase required or email solicitatation needed) but it is also the seed of a thought that I have been pondering for the last few years. I would like to share my experiences and thoughts and do not intend offense.

    I hope to bring awareness to ME/CFIDS and EDS/POTS through this post and my contest participation.

    This post is very long - sorry!

    Since ME/CFIDS is currently a diagnosis of exclusion, the label no longer fits if you are accurately diagnosed. About three years ago, I was diagnosed with EDS-Hypermobility type and a Primary Immune Deficiency- PIDD - Natural Killer Cell Deficiency so I no longer use ME/CFIDS or FMS as my label. Like many of you, I am a poster child for ME/CFIDS, regardless of whose guidelines you use. I don't hide from this label and work it into every conversation I can to point out that some ME/CFIDS and FMS patients may actually fall into one or more of these "rare" disorders.

    btw, as you read on, I am NOT saying ME/CFIDS does not exist.

    As I spend more time in the EDS and PIDD communities (now going on 3 years), I'm am starting to believe that some of us are in the wrong camp. The list of similarities is so long. For example FMS/ME/CFIDS and EDS patients have lost fingertips definition, have cardiomyopathy, PFO's, PEM, high lactic acid in muscles, rotating joint pain, joint replacements, DDD, scoliosis and other issues like Chiari, stenosis, POTS/dysautonomia/syncope, major gastrointestinal issues including GERD, hiatal hernias, slow motility, gastroparesis, IBS, malabsorption issues, difficulty with barometric pressure changes, intercranial hypertension, migraines, METHYLATION issues, MAST CELL Activation Disorder (causing all the allergies, food sensitivities, chemical sensitivities -we call this Multiple Chemical Sensitivities) but it seems to be the same thing from my view point. Sleep apnea, TMJ, nighttime Excessive Heart Rate Variability (the cortisol/adrenaline rushes at night), hypothyroidism, adrenal insufficiency. And everyone talks about brain fog!

    Since collagen is EVERYWHERE in your body, EDS is a multi-systemic disorder (just like ME/CFIDS)

    I believe that many diagnosed with FMS have Myofascial Pain Syndrome instead or as part of their EDS.

    The same goes for the Primary Immune Deficiencies - (by the way, not all EDSers have an immune dysfunction or they do but it's manageable). This subset has chronic viral and/or bacterial infections

    There are 6 main types of EDS but there are many crossover traits.

    Then most recently, I have been learning about Mitochondrial disorders and metabolic genetic disorders as a possibility and met someone recently who was a very active ME/CFIDS patients under Dr. Salvato and tracked down her own genetic disorder OTCD. There are over 200 varying mitochrondrial disorders - the ones that get attention are those severe or fatal ones affecting children. But there are many others and varying levels - The phrase..."we are all different but the same" holds true for these groups as well.

    My adult geneticist, Dr. Shweeta Dhar, Baylor College Houston has told me that 98-99% of her adult patients have had the ME/CFIDS/FMS label. When that occurs, everyone stops looking. Oh, and they all get told "you're stressed" or "you're a hypochondriac" and given an anti-depressant!

    Same story, different day!

    I regret that I spent YEARS in the ME/CFIDS camp when I "shoulda/coulda/woulda" kept looking. Actually, I never stopped looking but I never questioned the ME/CFIDS label after the first 5 years because it fit so well.

    While there is no cure for EDS - there are so many practical things to help make life better.

    While my POTS still gets worse every year, there are things I am doing to help manage it better plus I have been diagnosed with Pelvic Congestion and will have a procedure soon that may help.

    While my PIDD goes untreated by a doctor (due to funds and focus), my NK cells have increased (ever so slightly) by taking LDN and BH4. I've got some things in the pipeline to move forward with this

    So, I would like to give you hope and encourage you to research these areas and see if possibly your symptoms fit and maybe there is help for you. Finding doctors is difficult but not as difficult as ME/CFIDS docs. It may be harder to get an accurate EDS diagnosis and we all know how easy it is to get slapped with a fibro or chronic fatigue diagnosis, handed a anti-depressant script and sent on our way.

    In closing, here are some links to get you started. If you have any questions, please ask them on this forum - my time and energy are limited with all that I have going on and this way everyone benefits from questions. I will try to check in now and then to monitor any questions, thoughts or concerns.

    First link - an awareness group to help you find a local support group - online or face to face. They also have GREAT Doctor Speaker series with national top docs. They are supporting me in the mobility contest so scroll past the map and you will see my contest link, my photo and information. Voting continues for the next two weeks so any support would be appreciated. Humbled by the support and outpouring of good wishes. This site has so much great info and videos of Doctors speaking on EDS issues. It would be a good way to learn about the disorder.

    http://www.chronicpainpartners.com/

    The national EDS site - Latest news is that a new "mayo clinic" style facility is in the works where a patient can come in and get diagnosed all at once - there are many different specialties needed to address all of the issues. Notes from past conferences, brochures to give your doc, videos of doctors at conferences...so much info!

    www.ednf.org

    There are some great Facebook EDS groups that can help you determine if this is an issue for you. You may want to lurk a while and watch the familiar topics scroll by! If you see elegant_exotics - that's me!

    https://www.facebook.com/groups/152615741473177/https://www.facebook.com/groups/2210965239/thas one has an open and a closed version - many guidelines so read pinned post first.and inspire.com's EDNF page is very helpful although difficult to search.

    www.inspire.com (and search for EDS or EDNF)
    I am martiz there and I have a journal with my thoughts on methylation.

    PIDD - www.primaryimmune.org

    Sorry again for the very long post...


    Wishing you all the best and I hope these insights help someone, someday.

    Marti Zavala

    Moderator of CFSFM_Experimental
  2. tgeewiz

    tgeewiz Member

    Hi Marti.

    When I saw how long your post was, I almost moved on to the next one w/o reading it. But, when I saw it was from you I decided to give it a look. Not sure if you remember me, but I remember that you gave me some good advice years ago about something. I think it was about getting disability or something.

    Based on the few minutes I have Googled some of the diseases you mentioned, I don't think that I am a candidate. I saw something about fingers bending back and elastic skin. But, I will look up some of the other terms you mentioned.

    Like you, Dr. Salvato has been my doctor as well since I also live in Houston. I haven't been to see her in over a year since she is not on my current insurance plan.

    I am not sure about most people, but I have continued to look for another diagnosis beyond ME/CFS as the label is quite annoying and not as respectable as a "real" disease. "Real" in the eyes of the medical community that is. In the past 6 months or so I have been exploring Cushing's Syndrome since I have been experiencing headaches, back pain and other new symptoms. I will have a urine test on Monday to check this out.

    Anyway, thanks for your advice in the past. I will give some of those websites/message boards a look.

    Tim