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newly dx with POTS

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Hi, I've been told since I was 17 y/o that i was a medical mystery. Well, that got really old considering i'm 28 now. Just got dx with POTS along with inappropriate tachy and a bone island on Inside Lwrist? Could these be related? Do you know what this might indicate?

I also had surgery in jan. for a removeal of main duct in Rbreast due to bleeding. The s/sx have returned, so I'm also wondering what that might be? Maybe i am a medical mystery looking

I'm a RN, so I know the medical lingo/body systems ect., but have never heard of POTS or bleeding from breast or a frickin bone island?

If you have any ideas what so ever, please let me know when you can of course Smile

My specialist MDs are sort of stumped now, so i'm trying to be proactive and an advocate for myself by researching.
Thanks for taking time to read this!!
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replied April 23rd, 2009
Experienced User
Annabug, Do you have any more info about your condition yet? By POTS, do you mean Postural Orthostatic Tachycardia Syndrome?

My son started having symptoms of Orthostatic Intolerance three months ago, and although his doctors haven't given any definite reason, it is believed to be a further consequence of his secondary adrenal insufficiency and hormone loss.

There is also a possibility that he may have an autoimmune condition involved in this. He had an ANA test almost two years ago that indicated a positive reaction, but this was never followed up to find a diagnosis. (He will be retested soon; I suspect a connective tissue disease).

He also had a test through my nutritionist, which indicated severe oxidative stress. (again, almost two years ago)

Have you been tested for an autoimmune condition? Do you have any other symptoms? Any symptoms of adrenal hormone imbalance?

I hope both of us find some answers to our mysteries soon.
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replied April 23rd, 2009
Honeycomb,

I was regarding to Postural orthostatic tachycardia(POTS).

My s/sx my Specialist MD started when I was around 21y/o. I began to have runs of SVT(supraventricular tachycardia) My heart rate would shoot up to the 150s and i was very symptomatic then(dizzy, lighteheaded,etc)I also developed Raynauds phenomeon(an autoimmune, but the only one i have)

All of my hormones are WNL and there isn't a definate "reason" as to why/how i got it. I've been undiagosed for years now, MDs saying i was making it up and i was just dehydrated and anxious and basically dismissed me every time.

My heart rate continued/continues to go be tachy and times it has gotten up to the 190s, but i'm now asymptomatic, im guessing b/c my body is use to it after all these years?IDK.

My s/sx mainly are extreme fatigue, urinary retention, slow motility in Gi, Intense hot flashes, some part of my body could be cool and some hot, poor circulation in hands and feet, nausea if it a whole meal usually followed by vomiting:so now i just snack throughout the day and that has helped a lot, poor concetration, aches/pains just sort of all over at times, "fight or flight" for me is way out of control and im constantly on edgge., headaches, blurred vision, in like a fog at times.

I also forgot to mention another dx i have which is inappropriate tachycardia that meds werent effective. This wasw pre POTS dx. My MD and i had planned to have cardiac mapping/ablation/pacemaker and then i did the tilt test and came positive for POTS and he told me if he performed an ablation it would be detrimental for me b/c i have POTS!

TX is trial and error and there is not a prognosis as of now. Very frustrating, dispairing, sadd, etc

If you have any other questions, don't hesitate to ask and if i know, i'll let you know. hope this finds you well

annabug
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replied April 23rd, 2009
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Annabug,

Thank you for the website info. It looks very informative. I will be reading it.

I forgot to mention, my son's adrenal insufficiency is from a large pituitary cyst\adenoma. The neurosurgeon we spoke with last week doesn't think his dysautonomia symptoms are being caused by the tumor, but I think it must be at least an indirect cause, by way of hypoadrenalism, or norepinephrine imbalance.

We will have to schedule surgery soon, but I am having more tests run first to see what can be done to get him in better shape for surgery.

If your hormone levels are all normal, then I suppose you do not have an adrenal cause for your symptoms.
Have you had a brain MRI, or has anyone suggested your headaches and blurred vision could indicate a pituitary lesion? Many of your symptoms are just like my son's, but of course, these are common symptoms that could be many things (which is why so many pituitary problems go undiagnosed for far too long).

If it turns out my son does have a specific autoimmune disorder, I wonder if this will improve after surgery? His docs can't give me any definite answers. I hope all of his health problems improve, but I'm afraid this is just wishful thinking. Much will depend on the skill of the surgeon, and any damage to his pituitary gland.

You have suffered from your symptoms for a long time. I hope you can find the causes soon.
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replied April 23rd, 2009
So sorry to hear about your son!! Best wishes go out to you and your faminly=)

Yes, I've had all lab work( all normal) had a lumbar/thoracic/cerivical/brain MRI and agian normal.

So, your son has addisons nows secondary to a cyst/tumor on his pituitary gland? If that IS causing his symptoms and he goes through with surgery, he might have a really goood chance of probably not have many s/sx afterwards...my opinion. B/c if it's removed and of course after some time, he's body should start regulating on its own again. If he has a type of dysautonomia like POTS, there is no cure for it, not sure why/how pts get it, majority of MDs have NO clue about this due to lack of awareness. Little funding/grants=little research=limited tx options...it's still trial and error= and they don't have enough research yet to give a prognosis!!!


B/c the pituitary is also in control of so much, well not like the autonomic neverous system,(that contro;s everyhing in a persons body)...I'm asking about addisons b/c he has too little and it he had too much it would be cushings/

I hope that answered some of your questions(I'm by NO way and MD or whatever,i'm just giving you my opinion from what I know!=)

Good luck!!

Annabug
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