Angioedema, causes?

[Angela1266]

I have been experiencing swelling for the last 10 months. It started with a severe migraine and nausea. I thought I was getting a utility., and they gave me a sulfa drug. Two days later my back left kidney began to swell, became inflamed, hot and red. The swelling started spread around to abdominal area then up my chest. I was having a lot of pressure, tightness in my chest and shortness of breath ending up in the ER. After 14 specialists, an echo, laparoscopy, colon/endoscopy, extensive blood work, cat scans and 2 additional er visits, skin biopsy by dermatologist showed extensive fluid leading them to believe angioedema. I am taking Zyrtec but barely helps. The swelling is constant in my belly, bottoms of my feet swell, I bruise easily, neck is sore at base of head with large raspberry like mark. My neck gets so stiff and back of my shoulders swells. my neck, jaw and face sometimes swells too. My tongue is always swollen on left side. Throat gets tight and trouble swallowing.  My lip also turns blue. Any advice of where to go? Neuro is next month. Hope to get MRI. So frustrated. I am so dehydrated my skin is scaly and my throat has coating constantly. I hate this!! Anyone know what this could be? I have everyone stumped.

[Angela1266]

Can you resend your response?

[Angela1266]

Ok....has been 18 months since whole med issue started. Since my last post had spine X-ray showing a lower slight curvature of the spine. I also had ct scan done again and now shows: prominent periadnexal collaterals, enlarged bilateral gonadal veins, as well as stable hepatic and splenic cysts. I went to ob who suggested hysterectomy, yet said it may not be the issue. Then saw another vascular surgeon who is sending me for a venography. I get more pressure in the trunk area when I bend or sit too long. My legs are also swollen a.bit and have become vascular with prominent varicose veins. I get winded and light headed easily. I did research leading me to think it is nutcracker syndrome,but the surgeon says no. Any thoughts???

[Angela1266]

I had a bout of severe pain in my abdominal area and an mri was done. It did not show a whole lot, but it did show a swollen spleen. They are sending me to a gastroenterologist. Nervous, tired and frustrated...it has been almost a year with no diagnosis or resolve. I wonder if it could be sarcodosis. The dr. Is thinking angioedema. I am so tired of this bad nightmare.

[Angela1266]

Okay, went to dr. To and was told we are going to treat angioedema. Sending me to Boston to specialist. My back left kidney area is where the swelling started. I know there is something up there. No one is listening. I bet an MRI would show something. Arghhh.....

[Angela1266]

MRI came back saying I have herniated disc, bone spur and narrowing of cord canal. The neurologist says this has nothing to do with my swelling and is sending me to a neurologist to discuss my neck. I am still swollen, mostly in torso region and neck. Weird but I have also had a weird lump close to my belly button that swells and bruises quite often. I have shown it to several doctors and been told it is not a hernia or a tumor. I had a skin biopsy done on it and it revealed a significant amount of fluid in the dermis layer along with dialated blood vessels. The last dr. Told me maybe the punch biopsy did not go deep enough. So frustrated. Any thoughts?..

[Londres70]

Well.....you really can't make a diagnosis based on the Romberg test alone.  This test is checking balance and usually is part of a neuro examination.

[Angela1266]

What things can you diagnose from the Romberg test?
One side was stronger than the other.

[Londres70]

"does anyone know what  the neurologist tests for when he has you stand with arms extended, palms up and eyes closed"........sounds like the Romberg test.

"Or the test for strength of one side vs the other."........general strength test; checking if one side is weaker than the other or if both sides are weak; checking for strength deficits.  

Hopefully, you will get some answers soon.......hang in there.

Keep us posted.  

[Angela1266]

I was lucky enough to get into the neurologist yesterday. They did some testing and though it all went well, there were a few things that were documented. They did notice a right side weakness (and I am right handed) and were concerned about my stiff neck. They ordered a MRI, they did mention neurovascular, but still all still guesses. They ordered more blood work and urine all due back next wk. does anyone know what  the neurologist tests for when he has you stand with arms extended, palms up and eyes closed. Or the test for strength of one side vs the other.

[Angela1266]

I have been calling the neurologist daily to check if there is a cancellation and to move up my appt. Seeing a new primary this week and hoping he orders an MRI or pushes to get answers. I am now waking to black and blue eyes and my neck was blue in spots. My husband said the nape of my neck at the hairline has a raspberry like bruise. I also had swollen veins in my hand the last few days. They protruded so much and bulged, they looked like worms. It was gross. I am at the end of my rope. I am exhausted, physically and mentally. Just wish I had an answer.

[Londres70]

Keep us posted.

[Angela1266]

Thanks for your advice and input. I think once we see a neurologist it will quickly get diagnosed.

[Londres70]

I think this is neurovascular possibly.  My first thought was this is vascular, but you have stated the vascular surgeon told you no.  I am not so sure that he isn't wrong.  

[Angela1266]

Thanks. I am trying to get in earlier. The dermatologist that is treating me currently may call the office and get me in sooner. They never had any results till recently. The skin biopsy is the first result we have had. The swelling is constant but flare ups are coming more often and harder.thanks for your help. I saw a vascular surgeon, a general surgeon and neither said it was within their field. Is a neurologist the one to see? I think it is vascular related.

[Londres70]

I would recommend you go ahead and consult this Neurologist in March.  Can't you see him or her any sooner?  

[Angela1266]

So, neurologist is the one to see? I have appt in March. Trying to move it up. Thanks for your feedback.

[Londres70]

Well.....I am thinking this is Neurovacular then.  

[Angela1266]

Yes, went to urologist, nephrologist, did all the blood work and all checks out ok. I went to a rheumatologist and he ruled out autoimmune. I had all the blood work done and again that was ok. I have also been to cardiologist, infectious disease, endocrinologist, 2 allergists and ob/gym. When my skin biopsy came back it showed fluid in dermis layer and dialated blood vessels. This was the first type of finding of any so rt after all the tests. I have even had.lyme disease tests...all neg. that is why I am so frustrated.

[Londres70]

Have your kidneys and liver been thoroughly checked?  Have autoimmune conditions been ruled out, i.e. Lupus?  

[Angela1266]

Yes, well... vascular surgeon. He said nothing he could do and not his area. I keep thinking it is a vein or blood vessel issue. I have become very vascular, have varicose veins/ spider veins suddenly and the bruising. I also feel oxygen deprived when I swell a lot.

[Londres70]

Did you see a Vascular Specialist at all?