Just diagnosed

[ktmom]

Hello, After three years of feeling really ill, I was just diagnosed with POTS/dysautonomia and Chronic Fatigue Immune Dysfunction. I also have frequent migraines, very bad IBS, kidney stones, and mitral valve with regurgitation. I am so grateful to get a diagnosis!!! I have been to many dr's who diagnosed me with everything from anorexia (which I do not have) to Lupus (which apparantley I do not have either)-although it is still questionable.  I have two young children and am in the process of leaving my teaching position-because of my symptoms. My son has epilepsy and I am having a hard time managing everything.  I am grateful to find the group.  best wishes to everyone

[LivingInHope]

I'm glad you have gotten diagnosed- hopefully properly this time!  Now anorexia is different from anorexia nervosa.  The first simply means a poor/lack of appetite, whereas the second is an eating disorder.  Do you have a problem with lack of appetite?  How did they figure out you had chronic fatigue immune dysfunction?  Did you have borderline auto-immune blood testing, as to why the question about lupus or not?  It must be an extra-strain to have all those symptoms and to try to care for your son at the same time.  

I too have POTS.  I have IBS, GERD, IC, and migraines as well.  Lately, I've been thinking maybe I ought to ask for auto-immune testing.  Welcome to the forum!

[ktmom]

Hi and nice to meet you.  I do have lack of appetite and when I first got sick I lost alot of weight I am 5'5' and got down to 98 pounds-do to bad IBS/nausea. Now I have gained some back-but one doctor said my problem is that I am too thin and I just need to eat more cookies.  Needless to say I did not go back to him-.  I just got diagnosed by a Dr. In Miami who is supposed to be the best-so hoping we have the right diagnosis this time.  She said CFIDS because I had several immune system dysfunctions EBV,HHV-6 Virus reactivated and several kinds of Coxsackie and low T-killer cells-I also have some inflammation.  I am still confused though as she did not do my ANA-which I had asked for.  over the past few years, I had a postive ANA, low complements, and postive double stranded DNA at one lab then the other lab showed nothing. A pos. double-stranded DNA always means lupus but since it ws negative in the next lab the Dr. did not think I was likely to have it.  
POTS is very closely connected to autoimmune issues. I would get tested-you just have to get an ANA and if it is positive your doc will refer you to a rheumatologist.

thanks for connecting with me! Best wishes to you.

[LivingInHope]

It may be the doctor in Miami felt the previous positive ANA test(s) was/were sufficient (provided that isn't one of the things that came out negative in latter testing?)   There are doctors that are concerned about costs when ordering tests, so perhaps she was being judiciously frugal when it came to ANA?  I think if you feel you have the symptoms of lupus, it is worth pursuing getting that re-tested- to see what comes out as two out of three- positive or negative for the illness.

So then, regarding the "anorexia" diagnosis- that fits, but is not to be confused by people as the eating disorder, anorexia nervosa.  I'm glad you've been able to put on some of the weight you lost!  Re: the weight issue, I assume they likely ruled out hyperthyroidism?  I also hope they have checked you for low ferritin (iron stores) & other iron testing, to see if iron is low in your body, as you don't want low iron adding to your symptoms?

[Heiferly]

Welcome to our community!  I have dysautonomia (autonomic dysfunction, not otherwise specified), narcolepsy with cataplexy, and then a bunch of other diagnoses that mostly follow from those.  The only one that I feel important to mention now is that I have memory loss from a head injury I suffered (ah, fainting), so here's my official disclaimer that I sometimes do VERY poorly with short-term memory (and thus, sometimes committing things to long term memory) so I may repeat myself, ask you to repeat yourself, say things that don't quite make sense, etc., etc., ad nauseum.  Ahem.

That all being said, I'm also currently tackling some pain problems I have so I'm *slowly* getting back into the swing of things here.  I posted this in a separate thread, but in case you don't see it:  if you have any questions that you want specifically answered by me, you may want to send me a PM (private message).  Here's the full scoop:

http://www.medhelp.org/posts/Dysautonomia-Autonomic-Dysfunction/Please-Contact-Via-PM-For-Now/show/1508937

Again, welcome!  If you haven't already, you may want to check out our health pages.  You can find them by clicking on the "Health Pages" link by the yellow icon in the upper right corner of the page in our Dysautonomia Community.  We share our health pages with other neurology-related topics, so look around for topics relevant to you.  Also, some pages may be "under construction" at any given point in time, so pardon our dust.

Looking forward to getting to know you,
Heiferly.