Are these all symptoms of POTS Dysautonomia or something else ?

[dannyg]

 

I will try to keep this short as possible. November I was getting dizzy, light headed, heart racing and I was diagnosed with pots. Could not understand how I got it when I was perfectly healthy. Beginning of January I stopped having bowel movements, I lost 60 lb of weight for no reason, and went for a CT scan to see if there was any blockage, and they found a growth on my bladder. Since then I forgot about the pots, because I figured the growth on my bladder was cancer and these were the symptoms of cancer. Loss of weight for no reason, weak immune system, etc.  Then I had diverticulitis in March that would not clear up, and they removed a growth on my bladder with surgery. They found no cancer. As time went by I got worse. Now I look like skin and bones always dehydrated. I lost all my muscle mass, constant infections I can't fight off, still have bowel issues, not absorbing food, very fatigued, feel okay for a little while then get totally exhausted, feel like I'm running a temperature but I'm not, and my white blood cell count is always high about 11.

I have been to three hospitals, 13 doctors, all my biopsies came back saying no cancer, and the doctors don't know what's going on with this. I know eventually I have to see somebody that specializes in this, but I was wondering the symptoms I named, are they all part of pots? I had three cardiologist and all my doctors tell me there's something else going on, and they are all separate issues. My cardiologist was telling me I have cancer it's symptoms of cancer and I have POTS. My body looks and feels like I have cancer.

Are those all pots symptoms? Sudden loss of weight? Not absorbing food? Feeling like you're running a temperature  when you're not? Weak immune system that can't fight off any infection? Constantly getting infections? Urine protein at 30?

I thought for sure that I had cancer, and it caused my pots, but now I'm more confused than ever. Just wondering if anybody else has all these symptoms I have. Thank you

[haugr]

I've never heard of infections being associated with pots.  The others I think could possibly be attributed to high adrenaline.  I would recommend looking up the symptoms of a pheochromocytoma since it will give a good description of what happens when your adrenaline gets out of control.

[Pistol]

@dannyg - 

10 hours ago, dannyg said:

Are those all pots symptoms? Sudden loss of weight? Not absorbing food? Feeling like you're running a temperature  when you're not? Weak immune system that can't fight off any infection? Constantly getting infections? Urine protein at 30?

- feeling like running a fever but not having one sounds like POTS, but I don't think the rest of the symptoms do. Frequent infection can be due to an underlying chronic infection that has not been discovered - your body's immune system is constantly active, making you sick and weak. Sudden weight loss could be from the diverticulitis, not absorbing food sounds like a GI issue. Do you have a lot of diarrhea? Did your diverticulitis get fixed? Have they ruled out gall bladder issues? I know someone who got as sick and skinny as you describe and eventually they removed the gallbladder b/c it was severely inflamed without pain. --- I hope they will get to the bottom of this and you get relief soon. Hopefully the surgery will bring improvement. 

[dannyg]

1 hour ago, Pistol said:

@dannyg - 

- feeling like running a fever but not having one sounds like POTS, but I don't think the rest of the symptoms do. Frequent infection can be due to an underlying chronic infection that has not been discovered - your body's immune system is constantly active, making you sick and weak. Sudden weight loss could be from the diverticulitis, not absorbing food sounds like a GI issue. Do you have a lot of diarrhea? Did your diverticulitis get fixed? Have they ruled out gall bladder issues? I know someone who got as sick and skinny as you describe and eventually they removed the gallbladder b/c it was severely inflamed without pain. --- I hope they will get to the bottom of this and you get relief soon. Hopefully the surgery will bring improvement. 

I had an MRI a couple weeks ago, and it said I had gallbladder sludge. But the doctors never said anything about it or mentioned it. They removed about 8 inches of my sigmoid colon that's above my bladder. The last two days I've been in pain before I go to the bathroom probably cuz it's healing. No diarrhea I haven't had diarrhea in months. All constipation all the time as what the problem has been. He said he removed all the bad part of my colon that was chronically inflamed. And yes for the last seven months my body has chronically been trying to fight something off. I don't know if it was the growth on the bladder, or my colon. I stopped using the bathroom back in January and the growth on my bladder was found at that time. So I'm not sure what happened or caused all of this. I guess all I can do is wait a couple weeks see how this all heals up, and do like the surgeon said find a GI doctor to do all this testing and get blood work done to see if anything else is going on. He said maybe with this removed from the bladder and the intestine, my body might start to come back to normal a little bit.