About Me

Hi, Jackie!

I have POTS and have experienced this clinic firsthand. I have a multi-system version of dysautonomia including CVID, POTS primary/secondary with venous pooling, renal, colon, bladder and metabolic failures.

I was desparate to find help for my condition which devastated my body, life, family, and finances. I was a patient here and in bad shape when I arrived.

I was told that dysautonomia was “a symptom of being bedridden after the flu and a major surgery” and that my heart and body muscles had atrophied therefore needing exercise. The other symptoms had to be “all in my head”. Dr Suleman insisted that I did NOT have dysautonomia even though I had been tested and diagnosed at a clinic associated with the Mayo Hospital. He insisted that other system failures did not coincide with dysuatonomia – that my presentation was not typical.

I insisted that he hospitalize me, remove me from all meds and rerun tilt table and autonomic tests, Not only was I very positive for pots, but I was now sick with serious infections that he said didn’t exist. I then insisted on continuing antibiotics and antifungals as prescribed by my immunologist

Dr. Sulmann refused and instructed mnursee to ignore my immunologists instructions/medications in favor of his exercise/biofeedback program. The infections were so bad that I was hospitalized for iv antibiotics/antifungals and renal failure.

Upon followup with Dr. suleman’s , my mother and I witnessed the nurse destroyingdeath test records from my chart.ll lucilyl I had alrellady had a copymade
I almost died from etabolic acidosis by dr suleman denying that
rany symptoms could be seriousr in nature or could be life-threatening.
O
I left his practice immediately and later read of the suit filed against I’m him for the death of his patience for negligence as recorded in Westlaw records.

Run, don’t walk, to Dr. blair Grubb in Toledo, OH

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Hello! I love reading your blog and so I have nominated you for the Liebster Award! Congrats! Check out my post for all the details: http://myjourneythrume.wordpress.com/2013/10/19/dearest-beloved-we-are-gathered-here-today/

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I’m glad to read about another’s struggle with multiple system dysfunction. I, too, have this, have been put through the ringer, and still remain positive about my life. Though others can be frustrating at times. Argh.

We know our own bodies, have a right to be heard, make any decisions in our course of care, and be respected regardless of differing opinions.

I love your blog, thank you for your positive feedback and support to those still searching for relief.

My best advice is know your body, research your options, go with your gut feeling, and stand your ground. You can find a balance that works for you! But, in this rarely seen diagnosis, we are the captains of our own ship pioneering trails to discovery and possible answers to help others. 😉 That is pretty commendable for us all to be a part of.

Thanks for everyone’s courage to try new things and share with the community.

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Thank you smoky hope for sha inf your story! I am so sorry that you have had to heal with all this. I also studied psychology and now work in research… which I think helps to be mor practice and informed in my case. I’ve had a Sjogren’s diagnosis since 1989, the idiopathic trigeminal facial pain began in 2000, a Graves diagnosis in 2010 and now dysautonomia. I am currently dealing with the battle for IVIG pr approval now and a lm drudging through the literature and peer-reviewed publications to submit with my appeal. Would you perhaps be willing to chat over a call? I would love to hear about your experience, response to the IVIG you weee able to try and am honestly just looking for as much information and experiences as possible before submitting my final appeals.

Let me know. You can reach my by email and I’ll send you my number.

With gratitude,
Nat

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