Have You Had The Experience That No Doctor Quite Knows What's Wrong With You?

[lynnie22]

Recently I was diagnosed with a brain tumor. Well at first. Now they are not sure if it's a tumor or a growth or what. There's a dispute over what they are looking at and it's getting frustrating, let alone scary. I had the MRI because of my terrible vision and headaches. Well, maybe suggested one opthamologist it could be related to the POTS. But the most recent POTS neurologist that I went to at home suggested that I should really be under a cardiologist's care because it's not, in her opinion actually pots but OI. What is wrong with this picture?

I was diagnosed with POTS four years ago at Mayo. I returned to Mayo a few months ago because of worsening symptoms although their main suggestion was exercise which I am doing. So far no gains with my symptoms, but the tumor or whatever it is may or may not be contributing to some of the symptoms.

In my experience now, i have learned that the word 'syndrome' puts you into a category that most doctors do not know how to handle. I have also learned that reading an MRI is more of an art than a science, and I only hope that the next one they do very soon can actually be measured so I know how to proceed.

My vision remains a complete mystery, the tumor, a question, and pots, well, without a doctor or further treatment.

How do we proceed when the medical community is so confused?

Thanks.

Lynnie

[dkd]

I know how you feel. I've had two different neurologists totally contradict each other and some of my tests contradict each other. It's very frustrating and you don't know which one to believe.

I've spent years thinking that one thing was wrong and then another doc disagree with that, so that know I don't know what to believe. I keep thinking I'll get a third opinion, but I haven't yet.

Now, in your case, a possible brain tumor sounds very serious, so if you don't get any answers soon, please do go for another opinion.

Best wishes to you!!

[looneymom]

I understand your frustration. The last neurologist my son went to see said that none of his problems were related to neurology since he had low blood pressure and a high heart rate. Some doctors are just not comfortable treating a condition in their field when something else major is involved. If you are under the care of a cardiologist, see if he knows of a doctor that could help treat the problem. You do need a second opinion.

[sue1234]

So, what kind of tumor do they think it is? Is it on or near the pituitary?

[arizona girl]

A tumor certainly could be causing autonomic symptoms. That would be my priority if I were you. I'm not sure where you live but a neurologist that specializes in the brain would be the type of doctor I would seek out. Barrow neurological medical center in Arizona may be a center you'd like to consider. Can you get your films to another neuro that specializes in the brain and tumors?

There have been a few members here who ended up seeing doctors at mayo who were very exercised focused, while exercise is good if you can do it, if there is something else causing your autonomic symptoms, then exercise isn't going to correct that. I also don't understand why a specialist would say you need to see a cardiologist, just because you were not simply pots. All neuro's and/or cardios should understand the concept that all forms of dysautonomia are orthostatic intolerance, pots is simple one of them. Have you had a complete cardio work up to make sure you don't have an underlying cardiovascular cause? BTW you can have more than one form of dysautonomia at the same time. I'm hyperandrenergic (high BP), with pots and eventual syncope/near syncope under certain situations.

Again not sure where you are, but it is time to put your warrior hat on and go fight for yourself. There are times when one feels so deflated they just want to give up and doesn't know where to turn next. I've been there, so I know how it feels. BTW after giving up myself and getting back up after a very long time, I did find out what was wrong with me and we are now treating those causes (yes more than one) and while I'm not cured I am being managed and we know what to look for if I have a set back.

Stay strong!

[statesof]

I'm with everybody else, I think clarification on if you do or don't have a tumor should probably be the first priority and then it will be easier to figure out what is what after that. But yes I do knww the feeling of doctors not knowing what to do with you, I'm currently having that issue with 3 neurologists telling me they don't think they would be able to help me, but you just have to keep trying until you find the right doctor who listens but also is willing to investigate, and is qualified to deal with your symptoms.

[lynnie22]

Thanks for the feedback. I am VERY frustrated.....The autonomic dysfunction which may or may not be related to the may or may not be a tumor has never been helped. But maybe, as arizona girl suggests, there could be a relationship.

So this is the story: I live in New York City, I have an appointment tomorrow with a second opinion neurosurgeon who I don't know but is with a good hospital and I'm bringing my films and the conflicting MRI reports.

So Sue, yes, it is near the pituitary, leaning on the carotid artery. I could quote the terminology used in the report but I don't understand it. It is SOMETHING -- the first place it was seen it was called a tumor, but then the second radiology place said it looks like something else -- like some sort of defective growth of my pituitary that has always been there. No one knows really what it is, I will be having another scan soon, but am getting a second opinion in the meantime. You would think that radiologists are the experts in deciphering these MRIs but who knows. I had a couple of pituitary blood tests that were normal, but have not gotten to my endocrinologist for the slew of blood tests he always takes. He is good but always takes 13 tubes of blood and I am scheduled for removal of a huge polyp in three weeks in my intestines so don't want to be drained of blood.

Looney mom, that is so frustrating about the neurologist, although I can relate.

None of the neuros in NYC except possibly for one have had a clue what to do or really want to do anything.

Arizona Girl, I have periodic high blood pressure too which is why the last neurologist said she didn't want to go near me. I have had a cardiac workup, but am seeing the cardiologist again.....

The tumor does trump the rest of the problems though and I guess until I have the results of the next MRI to see if the tumor or whatever is stable, I will not rest well.

[sue1234]

I ask because I have 2 "shadows" on my pituitary that a neurosurgeon said could be "representative" of a tumor/tumors. This neuro said to come see him if/when I show abnormalities in endocrine lab work. My cortisol is this year just going high(by a few points, nothing drastic) and my vasopressin is always low. I spent the last couple years of my menopause with weird FSH/LH. One year I would be told I was in menopause, with high numbers, and the next year I would have a period, with low numbers. My TSH is weirdly low, even when I lessen my meds. Nothing screams abnormal, but lots of little inconsistencies.

[lynnie22]

So Sue for you, it sounds like watch and see. Did he suggest doing MRIs to get a better look at the shadows? Good question though, because yes, that's pretty much where this is. For many years since I had my thyroid removed, my thyroid numbers on synthroid were always abnormal, as if the synthroid was not being absorbed properly. Now ironically that seems to be normal. My adrenaline, on standing, shoots up, but that's consistent with pots or whatever I have. I'm not sure what vaopressin is. I do know the TSH is related to the pituitary in how much thryoid hormone it perceives one has. I do need to have that battery of blood tests as soon as I can.

[sue1234]

I had my thyroid removed 6 years ago, so can't seem to find the right dose. Vasopressin is the pituitary hormone ADH, or antidiuretic hormone. If it is low, you tend to pee all the time. I definitely do.

I have had another MRI since the original one 8 years ago, but the radiologist said everything looked normal. The Neuro did not review that one, so I've just been waiting to see if labs do change. Not much else I can do.

[corina]

So sorry to hear is Lynnie! I hope today will bring you some answers as this confusion and uncertainty must be quite nerve wrecking. Sending good thoughts your way!

[looneymom]

Good luck ith your appointment and hope you get some answers. Post when you can.

[Katybug]

Any feedback from today's neuro appt?

[lynnie22]

So hopeful news.....The second opinion neurosurgeon at Columbia looked at the films from recently and one I had from eight years ago -- he seemed to know how to read the films well -- he said no reason to worry. He said that the tumor or whatever it is, questions whether it's really a tumor either, has not changed in all these years and definitely he said is not the cause of any of my symptoms. It was very encouraging. He does not know what it is either, but as long as it remains the same, I guess it doesn't matter. This doctor at least went over the films with me, showing me everything. I will still have another MRI just to make sure and then will hopefully move on to dealing with the pots or not pots syndrome that no one knows what to do about. Thanks for the good wishes! I will keep you informed about the next MRI, hoping this surgeon is right.

No even if I still don't have an answer from the doctors of what is wrong, and how to help it, I at least am feeling encouraged....