Just Had First Meeting With Ans Specialist

[dsdmom]

OK, so I just got back from seeing the ANS specialist for the first time. I liked him, and it was good to see him, but I am very confused.

I have yet to have any autonomic testing done and I assumed he would want to do that right away. He said he didn't want to do any testing right now because I have had so much testing already (which pretty much rules out everything else). I went over my story for him, in a shortened version, and gave him my printed story for further reference. He asked why I hadn't been put on Florinef or anything else and I told him that another neurologist I had just seen was the first person to mention it but had told me to see someone who specialized in ANS issues.

So Dr. Novak, the doctor today, talked a bit about POTS and a bit about autonomic issues in general. He did not diagnose me with anything in particular, although it was understood I have autonomic issues. He said he didn't think that autonomic testing was really that necessary in my case since my blood pressure does not change upon standing. And if I have POTS he would prescribe the same treatment. So he sent me home with Florinef and I am starting .1 mg every other day for two weeks. I told him that I am super sensitive to drugs now (particularly SSRI's and SNRI's) and he said that was very common. He also said that, therefore, he was a bit worried if I would be able to tolerate Florinef.

I will see him in 2 months and we will then discuss further testing, including a skin biopsy. I guess I am most confused about this. He talked about nerve damage - autonomic neuropathy? What? I have nerve damage? I'm so confused! Why do I have damage? I asked him why he thought I developed my issues (pregnancy, hemorrhages, hysterectomy, PTSD) and he said it was hard to say. But he did say that he expected me to get better. But that it takes a long time for nerves to regenerate. They grow/regnerate 1-2mm a day...so I guess it could take years?

Can ANYBODY help me understand what he is talking about with nerve damage? I just thought my system was screwed up....I didn't know I had actual NERVE damage. Do we all???

And how would skin biopsy results differ from nerve conduction studies? My nerve conduction results were "the most normal" the doctors had ever seen.

Also - what kind of bad reactions could I expect from Florinef?

[maryfw]

I hate to sound ignorant, but what is an ANS specialist?

mary

Maybe I need one.

[dsdmom]

Hi Mary,

Sorry, ANS - Autonomic Nervous System specialist. I've seen neurologists before, but this doctor concentrates on the ANS.

[runningshoe]

I had been anxious to hear how your appt went. Thanks for posting. Was he nice? Was he patient? How much time did he spend with you? If you are worried about the florinef ask him if you can break the pills in half to get started. I take .1 a day but split it between am and pm. Are you salt loading as well? If so how much did he recommend? I don't have any answers to your questions but there are a lot of knowledgeable people who check in on this forum. Sounds like he was positive and upbeat about you getting better.

Lina

[juliegee]

Hi dsdmom-

I've heard this explanation before from my GI, who was treating me for supposed motility problems (nausea, vomiting, constipation.) He said that nerves regenerate very slowly..it would be a long time before I saw any improvement. I had lost 20 lbs I didn't need to lose. I, too, was confused as I wondered what in the heck was causing the nerve damage in the first place. That's never been answered for me.

Strangely enough, several months later, I began getting hives all over my face, etc. (I'd had unexplained idiopathic anaphylaxsis before.) My allergist put me on an antihistamine combo (ranitidine, zyrtec, singulair and benadryl) and lo and behold, I could eat again. My nausea virtually went away. I am being treated for mast cell activation disorder, which may account for my POTS and GI woes.

I need a skin biopsy (and bone marrow biopsy) to rule out full-blown mastocytosis. So, I find it quite odd that your doc wants a skin biopsy. Is he considering a mast cell problem? Do you know?

I think we both have more questions than answers. I just wanted you to know that I've heard the "nerve damage" explanation before....but never understood it's cause.

Be sure to let us know what else you find out.

Julie

[pat57]

dsdmom,

I figured my NCS was. I have had Hepatitis C 30 plus years.

maybe this will be helpful...from.

http://www.mayoclinic.com/health/autonomic...0544/DSECTION=3

A number of conditions can lead to damage of the autonomic nerves. The most common cause is diabetes. About half the people who have diabetes eventually develop some type of neuropathy.

Other causes may include:

* Alcoholism, a chronic, progressive disease that can lead to nerve damage

* Abnormal protein buildup in organs (amyloidosis), which affects the organs and the nervous system

* Autoimmune diseases, in which your immune system attacks and damages parts of your body, including your nerves

* Some tumors, which can press on nerves and cause direct or remote damage (paraneoplastic syndrome)

* Multiple system atrophy, a degenerative disorder that destroys the nervous system

* Surgical or traumatic injury to nerves

* Treatment with certain medications, including some chemotherapy drugs and anticholinergics

* Other chronic illnesses, such as Parkinson's disease and

[Mrs. Burschman]

dsdmom,

I don't think that you (or any of us) necessarily has nerve damage. I've never had any of the things on that Mayo list. My problem seems to be genetic, in that my brother, mom and grandpa have similar issues.

It sounds to me like he was just trying to rule out causes. The good news is, it sounds like even if your nerves did get damaged, the doc thinks they will repair themselves. And that's great news!

I'd just ask for a clarification the next time you see him. Or ask the nurse for a clarification. Sometimes, the nurse will talk to the doctor and then tell you in plain English what he means. Depending on the doc, some of them aren't good at speaking to us people without big, fancy medical degrees!

In any case, try not to worry too much. It's hard to do, I know!

Amy

[ajw4790]

Hi!

People, including those with POTS and other forms of autonomic dysfunction can have nerve damage (aka neuropathy). For myself I was diagnosed both with POTS and Small Fiber Neuropathy. Which means I do have nerve damage. It is starting distally at my feet and hands. They tested it with the QSART test during my autonomic nervous system testing (tilt table etc).

It is good that he feels that it could be reversible.

The nerve damage is part of what causes a lot of POTS symptoms, temperature regulation, sweating, etc.

So, yes probably a lot of us have nerve damage to some extent. But maybe try to look at it from the bright side that at least there is a test that shows why you have some of symptoms that have, and that there is hope of recovery of the nerves that have been damaged.

Nerve damage or neuropathy is not uncommon, one of the populations that it happens in frequently are diabetics. As, far as the causes there are multiple as previously listed. Carpal Tunnel Syndrome is another form of neuropathy, not autonomic though.

So, good luck! Wait and see what all the tests say, and what form of treatment he thinks would be best. Also, ask him questions. It sounds like he is really working with you and knows what he is talking about.

Hope this helps! Good luck!

[MomtoGiuliana]

I have a basic article on POTS I can e-mail to you if you PM your e-mail address to me.

A mild form of autonomic neuropathy is considered the most common cause of POTS. It is manifested by an inability of the peripheral vasculature

to constrict adequately in response to orthostatic stress. The article explains what is understood about this.

Most people with POTS improve over time, according to current understanding.

My specialist says it is not useful to do extensive testing to determine what is causing POTS, in many cases. The treatments will be the same regardless of the cause.

[stampingamy]

I too have POTS, Peripheral Neuropathy and Small Fiber Neuropathy. The small fiber neuropathy means that I have nerve damage in the small fibers of my muscles and that contributes to some of my symptoms. My neuro didn't know which came first - chicken or egg phenomenon. The neuropathy issues were diagnosed before the TTT. For awhile I wore patches to numb my ankles because my feet would feel tingly. It happened at night a lot and I had trouble falling asleep as I was bothered by it. However, when they started treating the POTS these other symptoms have gotten better too. It still happens, just not as often. I don't know if that means the treatment has helped my nerves regenerate.

Soon after I was diagnosed there was a peripheral neuropathy seminar in my town at a medical center. A lot of what he talked about was finding the cause of the neuropathy so one could treat it and then the nerves would start to regenerate, but it does happen slowly. When I asked him about POTS - he knew about it and said that yes, finding the cause could help, but neuropathies along with POTS are usually treated differently than ones caused by things such as diabetes.

Amy