Surviving and Thriving with Chronic Illness

A checklist for your symptoms!

Can you help complete this checklist of symptoms for us? We would like to get our plethora of potential symptoms in a peer-reviewed journal. This will help us with disability claims, dealing with schools, and getting out to physicians the extent of illness we can suffer. You can find it here: This is under the "Articles and Publications" section on the right-hand column of Thank you so much! Please spread the word! smile
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For the lazy among us, here’s the download link for the checklist
Download Checklist

Nev’r mind….thank you…I’ve got a Copy NOW!!

I was unable to open the docx.  I probably don’t have compatible word processing software.  (I usually use Google docs.)  I was able to get it partially opened with Windows Notepad.  Any suggestions?

Hi Diana, as you may or may not know, I also have PD or M.S.A. the correct dx is yet to be determined. I also have M.V.P.S./Dysautonomia and the symptoms are getting worse as you will see on the questionnaire I completed today. I have lost all ability to concentrate, my memory is terrible and my administrative skills are all but non-existent. I have noticed my O/I has begun to get worse and I am experiencing palpitations, chest pressure and shortness of breath. My Cardiologist wants me to get the valve repair surgery done A.S.A.P., but my Neurologist has advised against it due to the fact the most likely, post-op, the dysautonomia would worsen. Soooo, I guess the heart surgery is out and we will wait and see what happens. Anyway, I’m pleased that your P.O.T.S is gone; at least that one less thing you have to worry about.

God Bless,

I haven’t been able to download your form correctly.  I don’t have the correct word processing software apparently.  With Microsoft Wordpad, I am able to see a partial copy of your symptom list questions.  I cannot see beyond the first category, “This has happened”.  If you could tell me the remainder of the categories, I’ll finish up what I’m missing and send you the completed listings.

Thank you, WackyLisa!!! How did you do that?

smile Diana

Oh, Jeff, I’m soooo sorry to hear that news. That just plain sucks. Even knowing you’re not alone in this can’t always make it easier. I believe I know what is happening and am working as hard as I possibly can to get the treatment trials started ASAP. I’m humbly believe I understand what meds we need and why. Hang in, my friend. Big hug, Diana

Yea, Kate! Can you help Julie? wink Julie, I’m no expert on technology FOR SURE. Are you on the forum? I could email it to you, or jeez, we could go with SNAIL MAIL. Please just let me know your address at the contact page of the web site, OK. I’ll shoot it over! Thanks so much. wink Diana

Hi I have been diagnoised w/ EDS type 3 less than a yr ago only by 9/9 oon the Beighton score. I have numorus complaints from head to toe & would like to fill out your symptom checklist. I am only 33yrs old & feel like I am 80. I have found it very hard to find anyone in michigan that is to familiar w/ this condition. It is very stressful!!

Once we have completed the checklist, how do we go about returning it to you, or am I missing something?

your list has no mention of central apnea, hypothermia, numbness in fingers, presyncope… all of which I have with my dysautonomia (dx’d) which I suspect is PNS related.

Hi Diana, I recently started taking O.T.C. Zantac (150mg) & Zyrtec (10mg) and have noticed a vast improvement in my G.I. symptoms with less severe headache, and just a general sense of well being. Do you think I am on to something?

Thanks and God Bless,

How do I send you the completed form??

I love to be apart of this, but I can’t download the checklist.  I also haven’t been able to be register with the forum.  I have “subscribe” but it hasn’t let me sign in.

I’m having difficulty gaining access to the list. It’s really important to me for, my husband, daughter, self and potentially my son. After years of struggling with undiagnosed POTS, and told by drs. “Isn’t it great to sleep so much?” ” You just feel your heart more because you’re thin”, “don’t drink so much and then you won’t have to pee” being called “marfansish” with severe prolapsed mitral and tricuspid valves,  fibromyalgia, hypermobility and pain in whole body, “just work out more you’re probably deconditioned”, choking, CRPS, breathless, palpitations, “just calm down and stop stress”, headaches , rashes, many sensitivities/allergies/allergic reactions to the world, and on and on… no avail, we finally, finally have some POTs help and just heard the EDS diagnosis from a geneticist.  I’ve desperately been studying the information you’ve shared all I can and based on family history as well as own, in my gut (ahah)  I know its Mast Cell havoc having a grand ole time.  I just truly know it.  So now we’ve got a couple diagnoses and have a quest to find a team to help us. Holy! thank God for you Diana and those who share valuable info. We still feel lost but very hopeful and will persevere…. supported by what you all give.  So BIG THANKS.  BUT I still can’t get this list to download and print. Any help is greatly appreciated.  Betz

Hi there, Dr. Diana. I have recently come across your site and have found it very helpful! Thank you for creating these videos, finally someone who truly understands! Although I have been told my complaints sound like an auto immune disorder I have not been diagnosed. Other family members have been diagnosed with MS and Marfans but it they don’t quite cover all symptoms. My son is already on a daily beta blocker as a teenager.  I believe it is EDS. The local Rheumatologist I was seen by says he isn’t familiar with EDS; I guess at least not enough to say yes or no. I have felt like such a hypochondriac ever since my teenage years. Doctors tell me although MRI’s of my back reveal some issues I shouldn’t feel the amt of pain I complain of. I am so discouraged when they say that, they just don’t get it and it can be downright frustrating!

Could you please share with me the type of specialist I should go to? I am currently living in FL, however lived in MD most of my life. It sounds like GBMC hospital (located in MD) specializes in these types of disorders. And of course Johns Hopkins is there, but from what I can tell it could be a year before a new pt can be seen by the team at GBMC, not sure about the latter. Anyways here I am, wishing to be sleeping soundly, yet finding myself up and mind racing!

Thank you again for your postings, they are great, and give me hope! smile

Hi I’m just beginning to be diagnosed with hypermobility syndrome.  I contracted toxoplasmosis 5 years ago and instead of it just blowing over, it caused these giant lymph nodes that were diagnosed as tumors.  I had to go on medication for the disease and I find that every time I get sick my lymph nodes swell up to golf ball size again.  Is this apart of hypermobility, or should I continue looking for a reason for these crazy lymph nodes?  Thanks for all of your help

I was born before the computer generation. I can not figure out how to download the checklist. My address is Rt 2, Box 3971, Doniphan, MO 63935. My e-mail address is above. Please help me get a checklist.

I was diagnosed 2 years ago.  I have terminology type.  About 2 weeks I have tachycardia with blurry vision and have been exhausted. I had a cat scan last night and it did not show anything.  I am hoping for somediagnosis soon

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