autonomic test/diagnosis/mayo

[faithinspires]

I have not posted in quite some time, as I have been very ill. All meds are failing. I have however been keeping up with reading the posts. I relate to everyone's struggles & victories! I really enjoy the humor everyone in this group has!

After another 6 months of failing to respond to medications, adverse reactions, & baffling the doctors; I am now finally getting somewhere. They referred me to a neurologist or who referred me to another one.

There I had autonomic emg testing. They repeated TTT, did Valsalva manuever; breathing tests, did axon q-start reflex testing, & thermo regulatory sweat testing. The first neurologist also did further EMG tests with the needles in addition to a different kind of shock test.

The response by one neurologist is that I failed the Valsalva, TTT, Axon Qstarts, & thermal regulatory sweat tests severely. There were severe, complex abnormalities with all organ systems involved. And that I have significant autonomic nervous system dysfunction.

The response of the other neurologist said that I have early post ganglioc sudomotor dysfunction, vasomotor adregenic dysfunction, and hereditary autonomic sensory neuropathy.

Both neurologists, & my EP cardiologist have all stated that this is beyond their expertise as far as NCS/POTS goes. The conscensus of opinion is referral to Dr. Phillip Low at Mayo in Rochester. They have spoke with him on the phone & faxed my tests; dr's notes per his request; so that he can review them & let me know when he will see me. Its a drive & expense their for me...but more than willing to go. (I took my doctor their for some of her testing related to NCS & POTS.

I do not know exactly what this all means, so if anyone has any input on any of it, I would appreciate it. I am glad that at least things are beginning to show on tests, that I am getting more specific answers, & hopefully more specific treatment.

I can't change this, so I have decided that I just want to know exactly what I have, what it means, & get on with living & making whatever necessary accomadotions that I need to make.

Enjoying the things I can in life with a new found apprecitation!

Take Care & Hi to all! Renee

[Jacquie802]

Hi Renee, I'm sorry you are feeling soo aweful. I'm glad your docs are getting you to the best care out there though. Take care.

Jacquie

[Ernie]

Hi,

It sounds that you have a serious case of autonomic dysfunction.

It is good that your docs have referred you to Mayo. Maybe they will come up with a treatment plan.

Hope things get better for you.

[Mrs. Glass]

Here, here, I agree with you. If nothing can be done, I at least want to know what is wrong with me. At least you have doctors who are willing to do these tests. The only tests that I have had is MRI's a partial EMG and a TTT, and a bunch of blood work. My meds are not doing any good either. I am about ready to stop them totally. They just make me sick. I have to keep adjusting them to try to find the right combination, and so far nothing has worked. I am on the waiting list for the Mayo clinic in Arizona. I just called them myself. I am tired of these doctors here. They do not know what they are doing. Now all I can do is wait. Hope you start feeling better. Vanessa

[DSM3KIDZ]

I don't want to discourage you but I failed all the same tests you did but the treatment options they offered me are no different than the ones many on this site use.

I was dx in Jan. 05 and they now just started treating me since things are getting alittle worse othostatic wise. I started domperidone last week for my stomach emptying issues (gastoparesis) and flornief. I did try mestinon in the past and no improvement was noted.

I have noticed alot of relief in my nausea but not in the orthostatics yet.

After I failed all those tests they dx me with autonomic neuropathy which is just another name for autonomic dysfunction. (from what I understand)

Did you fail the sweat test from sweating to much or not enough? I was as dry as a piece of toast.

I'm glad they are sending you to Mayo. I also live in Wisconsin and see a neurologist who worked at Mayo and now has her own practice. All my test go through Mayo and she is constantly doing research there so if your near Milwaukee and need a good neurologist who specialized in Autonomic dysfunction her name is Dr. Rose Dotson. Also Froedart has an autonomic lab and seems very knowledgeable.

I'm also a mother of 3 (7,4 & 22mo.) so we have alot in common. Both live in Wisconsin, both have three kids and both have a really wacked out system.

Email me personally if you have any questions.

Hang in there

Dayna