Kris4444

Thanks everyone. I will check out the links you provided.

Lily, NET deficiency was mentioned by my doctor as a possibility. I was told by another doctor that NET deficiency would show up on the MIBG as a lack of cardiac uptake of the MIBG iodine. When I asked my doctor about this he said they weren't looking for cardiac uptake, rather catecholamine secreting tumors and thinks that I'd have to have the test done again to determine cardiac uptake. Not sure about this. Waiting on other doctor's opinion. Hopefully the two of them can talk to each other and figure this out. I'm sick of all of it.

He hasn't said a word regarding the MIBG. He has mentioned NET deficiency. Supposed to be trying to get blood to specialist at the NIH but that has been in the works for months. Beta blockers have been really helpful but still having issues. I'm getting really discouraged.

Hi All,

Yesterday I had an MIBG/Spect scan done. I got the results this morning and they were negative for any tumor. The reason for the test was high levels of norepinephrine as well as high dopamine. I was having pretty severe attacks when exercising or riding, vertigo, heavy sweating, tremors, flushing. Since starting a beta blocker some of the symptoms have greatly improved but I'm still having issues on days where the weather is hot.

Any suggestions for what else, besides a pheo, can cause high levels of catecholamines? Is this just the way I'm wired? Thanks.

Thank you! I too rode hunter/jumper growing up. In my 20's I switched to dressage. My daughter jumps and is learning dressage as well but she thinks it's boring lol. 

Good luck with the IVIG! I hope it helps. Please let us know how you feel while going through it. 

Thanks. This is my second time. If I get denied I'll have no choice but to get a lawyer. Thanks for the advice! 

Thank you Kim and Sarah. I've been to see the psychologist. It went ok I think. He said he'd never met someone with all of my medical issues...

Something important that I forgot to mention. I was diagnosed with the flu a little less than 2 weeks ago. Was on Tamiflu. My rheumy says it's very common to have an autoimmune flare after having the flu and wants to start me back on prednisone, which I just got off of. Ugh. My ANS doctor is not responding to my questions regarding mast cell and beta blockers.

I have been on the nadolol for 8 weeks. I started on 20 mgs for the first 6 and 2 weeks ago we upped it to 30 mgs.

I will ask the doc about skipping the BB for a day or two and see what happens.

I don't have allergies or asthma. 

Yes, the itching is HORRIBLE!!

Saturday afternoon I started flushing (which isn't unusual as I have had this issue for years) but the flushing has not subsided. Whether it is related to my autoimmune diseases or something else remains to be seen. Usually the flushing is on and off and does not itch but is red and hot. It's in the butterfly shape of lupus usually. This is different. It's hot, itchy, red and changes locations on my face and neck throughout the day. Eating any food makes it worse and I am itchy all over my body. Benedryl has not helped.

My ANS doctor thinks that I may have mast cell issues, yet he put me on nadolol which is a beta blocker, to try and get my bp and heart rate under control. It has helped with the BP and heart rate but now I'm concerned that this flushing that isn't going away is my body telling me that my mast cells are out of control. 

The problem is that my ANS doctor keeps ASKING me what I'd like to do? I want him to TELL me what to do! I am not a doctor, I shouldn't be the one to decide if I should start or stop medications! 

In the meantime they are trying to get an MIBG scan approved by my insurance and that isn't going well either. My norepinephrine and dopamine are high. I'm very frustrated at this point. I've never had this particular flush before. The itching is keeping me up at night. I honestly don't know what to do. Any suggestions would be great. Thank you!

EBV started all of my problems too. I'm not sure what to think about this new doctor and his diagnosis. He is sending me for an MIBG scan now. Just have to make sure it's covered by my insurance. The doctor had to send a letter for insurance to review.

Hi all. I'm still struggling with symptoms during and after exercise which last all day. My new ANS doctor told me today that he thinks I may be suffering from postinfectious/immune mediated autonomic neuropathy. He says he has to consider what further testing he might want to do. He has also put an email in to a doctor at NIH to see if we can send my catecholamine blood to him for further testing. So far, no response back from NIH.

Can anyone tell me what this new possible diagnosis is? I've tried to Google info on it but it seems it encompasses several different disorders? I'm wondering why he is thinking this.

The symptoms that I deal with during and after riding my horse or exercising are: flushing, profuse sweating, goosebumps, vertigo (while exercising) post exercise: issues with thermoregulation. I am freezing all day after exercise even after showering. When I finally warm up, usually at bedtime, I overheat and get very red everywhere and fall can't stay awake.

I'm getting very frustrated as this doctor ran all new ANS testing and found many issues but hasn't answered many of my questions. He has put me on a beta blocker even though he thinks I have mast cell issues. The beta blocker does seem to help when I'm riding but not if I do aerobic type exercise like walking quickly outside or on the treadmill. I run into most of the issues when I STOP moving. The vertigo, flushing and sweating get worse when I'm finished exercising or if I slow down my pace.

Any info on this post infectious immune mediated autonomic neuropathy would be appreciated. Thank you!

I think all doctors these days are overloaded with patients. It's crazy. Booked 3 or more months out, not allowing follow up appointments after test results. Don't get me started.

Kitt I PMed you. Thanks for the link.

That's ok. Mine met with me after as well but the catecholamine results weren't in yet.

Now he wants to send me to NIH or at least send my blood there for a more in depth catecholamine work up. Ugh.

Ok, good to know. I have a cardiologist that I've seen before for another issue. This neurologist is new to me and he gave me the bp meds so I guess I'll pose the question to him and see what he thinks is necessary. Thank you!

It does. Thank you.

I have gastroparesis (the antrum portion of my stomach does not work), esophageal dysmotility, colonic inertia and pelvic floor dysfunction. I have had many EGD's and colonoscopies. I was told my issues are due to scleroderma sine scleroderma, but my new ANS doctor thinks that it could be damage to the vagal nerve causing the digestion problems. That is one of the questions that is still in the air at the moment.

While at Mayo they did a gastroduoadenal manometry exam and we were able to find out that the antrum portion of the stomach (the portion that grinds up your food before sending it to the small bowel) does not work. The doctor there thought it was neurological in nature (vagas nerve damage). I just went through repeat ANS testing with a new doctor and one of my questions to him is if my GI problems are dyautonomia related. We will see.

Good luck on your procedures. They aren't too bad to go through.

My ANS tests results were abnormal. Still waiting on a definite diagnosis of Hyper Pots but the doctor said we can email back and forth if I have questions. I sent him 15 questions LOL. He will probably hate me.

One of my questions was do I need a cardiologist? I had an abnormal deep breathing test with values well below the norm, I have orthostatic tachycardia and failed the TTT, Valsalva and handgrip test. I also have high dopamine and NE.

I do actually have a cardiologist that I've seen in the past but don't want to complicate things further by adding yet another doctor to the mix if it isn't necessary. I wondered what you guys do? Do you have a cardiologist that you see?

Thanks.

Maybe I shouldn't mention the name of the hospital.

The results are not normal. My tilt table test was abnormal, the valsalva was abnormal and the deep breathing was abnormal. My catecholamine testing was also abnormal with high levels of NE and dopamine. That much I know. I don't understand how to interpret the numbers on some of the tests regarding blood pressure and heart rate. They do not offer a diagnosis which I thought was weird.

I did call and speak to the nurse. She said the diagnosis is autonomic nervous system dysfunction. As for Hyper Pots she said they don't use Pots as a diagnosis and they don't even have a code for it. She said since the catecholamine testing was abnormal that it does indicate a hyperadrenergic issue but that I'd have to speak to the doctor. She said to make an appointment for 6 months from now! ARE YOU KIDDING ME? She said I can contact him via their portal. I sent an email to him asking several questions. We will see how he responds. I do intend to have a face to face with him to go over the results and have him explain to me what is going on. I will not wait 6 months.

I asked them to fax me over the results since no one was getting back to me regarding talking about the results, making an appointment to discuss or telling me what the plan is. Please help me figure out what this means. I did speak to the nurse before I saw all of this. I asked her if my diagnosis was that of Hyper Pots and she informed me that they don't use that diagnosis, my diagnosis is "autonomic nervous system dysfunction" I asked if because of my cathecholamines if I was considered "hyperadrenergic" and she said that he didn't have that written anywhere but that the high NE and dopamine would indicate that. So I don't know what to think. She said to keep in touch regarding how I'm feeling on the beta blocker and make an appointment for 6 months from now. Guess that means he isn't going to discuss anything with me anytime soon.

For the ANS testing this is what the summary said:

QSWEAT responses were normal

Heart rate range to deep breathing was decreased on both attempts (not explained by progressive tachycardia)

Valsalva ratios were normal

BP responses during the Valsalva maneuver were abnormal due to prominent phase III

Head up tilt table for 10 minutes showed transient initial hypotension followed by stabilization and accompanied by sustained mild tachycardia. Hand grip caused sustained HTN and increasing tachycardia. The patient complined of:

dizziness, blurred peripheral vision

Baroreflex vagal sensitivity was normal

Baroreflex adrenergic sensitivity was normal

Interpretation:

There is evidence for mild cardiovagal dysfunction and orthostatic tachycardia

Catecholamine results Supine:

Norepinephrine 858 Lab values 112-658 pg/ml

Epinenephrine 34 Lab values less than 50 pg/ml

Dopamine 41 Lab values Less than 10 pg/ml

Total 930 Lab 123-671

Catecholamine results Standing:

Norepinephrine 990 Lab 217-1109

Epinenephrine 43 Lab Less than 95

Dopamine 37 Lab Less than 20

Total 1070 Lab 242-1125

Keep in mind that the STANDING portion of my test went horribly wrong. The IV was barely dripping blood and they poked and prodded for over 20 minutes with me standing the entire time. I was horribly bruised for over a week. They did say that one part of the test had to be rerun but didn't say which one.

I'm concerned over the cardiovascular stuff as this wasn't really spoken about and I'm not sure what to make of it or of what happens during the Valsalva. Can anyone give me insight into any of this? Does this sound like a hyper pots diagnosis?

There are specifics for the TTT showing numbers for SBP, DBP, HR and a summary that doesn't really make any sense to me but shows a SBP change of -35.0?

Any help making sense of this would be appreciated! Thank you!!

Thanks. I just got my results today. I'm confused about some of them. May do a new post on it later.

I'm sorry you are having a hard time getting diagnosed. I too just want to feel better and so far a beta blocker seems to be helping. I hope you get your answers.

Thank you toomanyproblems!

I'm sorry Rob. Is there anything you can do that helps to ease your anxiety?