What To Do When Run Out Of Tests?

[Racer]

I am so extremely frustrated, my current doctors have run all the standard tests, and they dont know what else to do. I dont appear to be "that sick" so I am just being tossed in the wait and see bin. You know, the "wait 6 months and see how you feel". I have been in critical situations twice now, seriously, how many times do I have to almost die before I am taken serious!?! I cant figure out how to get into a larger hospital for care?

I am on a liquid diet because of nausea/vomiting, abdominal pain, and severe constipation. I have tried many medications, and have lost almost 30 pounds the past two months. Those problems lead to me being dehydrated, and that just drops my blood pressure. So far I have had... Upper scope: normal, colonoscopy: normal, gastric empty: normal, abdominal ultrasound and abdominal ct: liver tumor (unknown type), liver function: sufficient, abdominal xray x2: constipation. I am just supposed to wait and see? Ugh

It is worse yet with the neurologist, I had two seizures, documented while in the hospital, and a sudden onset of numerous neuro problems, lose of reflexes, nystagmus, neurogenic bladder, and I cant get any explanation from him. Tests, head ct, head mri, 24hr eeg, all normal. His conclusion is that everything is normal, and to keep taking seizure meds to prevent it from happening again.

So frustrated, had the colonoscopy this morning, only to be told to "take fiber". Seriously? I wanted to ask them if anyone around actually takes notes, but all I could do is sit and smile because I was still feeling the propofol

[Katybug]

Racer,

I'm sorry you're down and out. Did you ever get a second opinion from an oncologist on he liver tumor? How about a second neuro consult? I feel like tumors and seizures warrant second opinions if current docs don't have reasonable answers or treatment. And, I'm pretty sure if it was their spouse with these things, "wait 6 months and see" wouldn't qualify as a treatment plan. I know it's hard but you have to be an advocate for yourself.

[davecom]

As far as the neuro goes... have you had the panel of autonomic tests? Have you had the small fiber neuropathy skin biopsy? QSART?

[Racer]

Racer,

I'm sorry you're down and out. Did you ever get a second opinion from an oncologist on he liver tumor? How about a second neuro consult? I feel like tumors and seizures warrant second opinions if current docs don't have reasonable answers or treatment. And, I'm pretty sure if it was their spouse with these things, "wait 6 months and see" wouldn't qualify as a treatment plan. I know it's hard but you have to be an advocate for yourself.

Thanks, no on the oncologist, I cant get a doctor to give me a referral to one. I have had at least three different GI doctors look at the tumor images, but non of them seemed sure. The doctor who wrote up the report on the scans suggested I have another ct scan to get a better view, but my doctor wants to just wait 6 months to see if it grows.

I cant seem to get any communication between doctors, and they are only willing to consider problems that directly relate to the specialty. Everything comes down to referrals, I cant seem to get the referrals. I dont know how to go about contacting another hospital and asking for help or if this is a proper thing to do in my situation. I dont know, maybe I am bad at advocating, I have trouble communicating sometimes, I dont know how to improve this. I learned how to communicate and be social threw instruction and trial/error, so I obviously have some gaps in these sort of skills.

[Racer]

As far as the neuro goes... have you had the panel of autonomic tests? Have you had the small fiber neuropathy skin biopsy? QSART?

No qsart or biopsy, my cardiologist is the one who diagnosed me, based on my positive TTT along with my other tests.

[Katybug]

Racer,

I'm going to send you a private message.

[davecom]

As far as the neuro goes... have you had the panel of autonomic tests? Have you had the small fiber neuropathy skin biopsy? QSART?

No qsart or biopsy, my cardiologist is the one who diagnosed me, based on my positive TTT along with my other tests.

If you're wondering where to go next - that might be next. If you need help advocating for it, perhaps show the doctor the Mayo study showing 50% of POTS patients have autonomic neuropathy.

[cupcakemomma5]

Funny, (not in the laughable way).

I have had those exact test, and I ended up with a benign tumor on my liver as well.(With the typical check back in 6 months ).

Everything else that has been poked and probed I get so tired of being somebody's lab rat!

I guess the next thing would be to push for more autonomic testing.

I wish you all the best

Hugs

[Racer]

Funny, (not in the laughable way).

I have had those exact test, and I ended up with a benign tumor on my liver as well.(With the typical check back in 6 months ).

Everything else that has been poked and probed I get so tired of being somebody's lab rat!

I guess the next thing would be to push for more autonomic testing.

I wish you all the best

Hugs

Thanks

Is it a benign hemangioma? How big? The reason I ask (as you probably already know), a hemangioma that gets to big can cause autonomic problems along with a ton of other problems. These things can get very dangerous, that is usually why they keep a eye on growth. Did a GI dr diagnose it?

Doctors are not sure of the type of tumor I have. Not knowing is hard, not sure I want to wait 6 months to find out what to do. Probably not a hemangioma, and it seems to be causing at least some problems for me. From what I read, when they are not sure of the type, they usually remove it. From what I understand, liver surgery is a fairly major surgery.

If you just recently had your first scan, maybe you could request a scan in a month to make sure it isn't rapid growing? It might give some peace of mind (if you need it) to wait that first 6 months