How Serious Is This Affliction?

[vachick]

My doctor recently diagnosed me with Dysautonomia, although I do not know what type. The only thing he did to diagnose me was the ANSAR test. Is anyone familiar with that? Is that enough to diagnose me?

He also thinks I have Chronic Lyme and FMS.

My blood pressure is always pretty low (96/60) and heart rate around 75 bpm. Here are my main symptoms:

1. Debilitating lower back pain on my right side only

2. Right thigh goes numb when I exercise

3. Sluggish gallbladder (no stones) which leads to GI dysfunctionality

4. Difficulty urinating (I have to push it out)

5. Occasional periods where I am constantly dizzy; I have only had a handful of times when I almost passed out when standing or quickly rising out of bed

6. Difficulty swallowing

7. Extreme muscle fatigue (I cannot hold a hair dryer for more than one minute over my head)

8. Myclonic jerking of muscles

9. This one is embarrassing, but...it seems like my sexual muscles do not work anymore (that is the most delicate way I could put it)

I am beginning to wonder if I am having some sort of total body system degeneration. It feels like all of my muscles are unable to work and are getting weaker by the month.

This scares me. Could I have MSA? How serious is this dysautonomia thing? Is there anything that can confirm that I have this and what type?

Thank you for your kind assistance.

[labas_2u@shaw.ca]

Hi and welcome!!

I am unable to answer your question but, I know that there are some awesome people here that are VERY knowledgable and that will be able to!! Sometimes responses are slow in coming because a lot of people (like myself) are not on here all that often. I know your fear and are anxious for someone to answer you.

(I use to check the forum every 5 minutes when I first started posting)

Once again...welcome and just hold tight...

Maggs

[Dizzy Dame]

You're a bit lucky in that the chronic lyme is possibly causing many of your neruological symptoms (ie. the dizziness, difficulty swallowing etc.). Hopefully with treatment of the lyme, those symptoms will improve or go away alltoghether.

However, it's very difficult to tell how any individual will fare when it comes to Dysautonomia. Most get better (around 80%) with treatment and proper diet and lifestyle changes, some stay the same despite treatment etc., and some get worse despite treatment. Not going through with the proper treatments and lifestyle changes will lessen your chances of recovery.

As for how serious dysautonomia is, it completely depends on HOW you're affected. For some, dysautonomia is only a mild irritant, for others (like me) it's disabling, and still for others it's completely incapacitating. The specturm varies greatly. So, to answer your question, how your dysautonomia affects your life determines how serious it is.

I know that's probably not a very fulfilling answer, but as you'll probably learn, dysautonomia is still a relatively unresearched, underdiagnosed, and undertreated condition, so there's very little room for "comfort". The best weapon you have is to arm yourself with knowledge and a positive attitude. With those two things, you can overcome just about anything.

Good luck with your lyme treatment! Hopefully as your lyme dies off, so to will your symptoms.

-Lauren

[labas_2u@shaw.ca]

That was GREAT Lauren!!

I was hoping someone like yourself would answer...

The combination of support and knowledge from this forum is the best!

Maggs

[vachick]

Thank you for your responses.

How did you get positively diagnosed? My doc did the ANSAR test and first told me I was fine and then told me that he had consulted with another doctor and that I have a slight parasympathetic nervous system imbalance. He is only treating me with nor-triptoline and sometimes I take DGL. Should I be taking other things, too?

I have been on antibiotics for 5 1/2 months now with little relief of my symptoms so I am unsure if I really have Lyme. ugh. I am about to start new insurance with military doctors and am frightened that they will not understand this affliction.

[Dizzy Dame]

I'm fairly unfamiliar with the ANSAR test, although I know a bit about it from previous posts. You might want to consider getting a work-up from a doctor that specializes in dysautonomia. There are centers like Mayo, and Vanderbilt who have whole teams of docs who study our condition, and there are also Dr's like Dr. Grubb who are pioneers in this field.

I was diagnosed via a Tilt Table Test, and had a work-up at Vanderbilt where they found exaggerated levels of nor-epi and other catecholamines in my blood.

I'm sorry that you haven't been responding to antibiotics. Hopefully you can find a doctor who knows a bit more about dysautonomia and can get some good treatment.

[bttrflyamby1981]

Hi and welcome!

I wish you the best and hope you gain the info your looking for!

Amber

[Guest dionna]

Thank you for your responses.

How did you get positively diagnosed? My doc did the ANSAR test and first told me I was fine and then told me that he had consulted with another doctor and that I have a slight parasympathetic nervous system imbalance. He is only treating me with nor-triptoline and sometimes I take DGL. Should I be taking other things, too?

I have been on antibiotics for 5 1/2 months now with little relief of my symptoms so I am unsure if I really have Lyme. ugh. I am about to start new insurance with military doctors and am frightened that they will not understand this affliction.

guess what! i promise that some military docs are familiar with dysautonomia! i was diagnosed with POTS and NCS while i was still in the marine corps and they retired me with it. i did pm you so be sure to check that out. if you have any questions just let me know.

dionna