Really need help with this one!!!
 

I recently received the results back from an MRI of my brain and a paraneoplastic panel that was sent to the Mayo clinic.
The MRI showed 3 - 4 tiny foci and the paraneoplastic panel shows a positive hit on Neuronal Acetylcholine Ganglionic Receptor Antibody (Alpha 3). .09 nmol/L

Some of this seems to point to dysautonomia or POTS or Guillain-Barre

Does anyone have any ideas of what this could be? Is there a connection between the MRI and the antibody?

I had someone who reads MRI results for the brain everyday say it is not uncommon for a person in their 40's to have some spots in white matter. You will have more as you age.
But, the antibody that I tested positive for is quite troubling.

Here are some of the symptoms I am experiencing
PN symptoms in hands and feet
Twitching all over my body
Fullness, ringing in ears - Tinnitus
Feet become cold and fullness is gone. Then after some time the bottom of feet will become bright red and toes may become purple.
Constipation (Bright red blood in stool)
Sometimes get dizzy when I stand up
Sometimes I become tired/lethargic suddenly w/out activity
Brain fog
Drymouth (Could it be the nortriptyline)
Flush face- red nose - ears red - (all are hot to touch) happens alot when I get upset
Sometimes have twitching around eyes - have has some around my face and all over my body but mostly in legs near calves
Urination flow start/stop, usually at night (Had this issue with Cymbalta - may be the nortriptyline)
Seems the only part of me that sweats now is the bottom of my feet
Hands become very cold and fingertips wrinkle - Fingernails have a light purple tint - Then hours later after being cold the hands will become bright red and very hot.

Thanks in advance...

Your symptoms sound like my Dysautonomia. I have POTS which is a type of Dysautonomia. You stand and the pulse is 30 or more beats more than sitting or lying down.

You feel lightheaded standing? Have you taken your bp and heart rate sitting and standing? I was bedridden, then in a wheelchair with this. Now I can walk a lot, but in large places, I use a scooter or w.chair. My heart rate climbs if I try to do things like clean or use my arms a lot. Hubby does a lot, but we have house cleaners do the cleaning since he works all day.

You can look at Dinet.org to see if the information helps you.

Not sure. But it sounds like the same antibodies they test for in myesthenia gravis.

I think you should ask over there.

BTW Cymbalta was studied for bladder problems in the elderly.
Supposed to help with incontinence. But it wasn't reliable.
So I would expect some effects on the bladder like you had.

I'll look around more tomorrow. But in the meantime, ask our MG forum. They are really helpful there.

Hey Sally,
My lightheaded ness will sometimes occur when I stand up, like a head rush but far worse and lasts longer.(effects can last for hours)
If I am already standing, I am generally fine except for foot pain.
I also seem to without any form of exercise become lethargic, sometimes confused, like brain fog I guess.
The only thing I have noticed so far is that when I stand up and have an episode, I feel my left cardiac artery and it is almost non existent. The right cardiac artery seems to function Ok. Do you have any of the weird Raynauds like symptoms in your hands or feet that I mentioned?

Thanks Ms. D
My neuro just texted me and said that he spoke with a Mayo specialist that has seen what I have, don't have the details yet, but I will let everyone know soon.
I still appreciate any further information you can glean.
This is a hard one I know, and am so happy to have people on this site who care enough and understand.

Hey Sally,

Did you ever try IVIG for the dysautonomia? If it is autoimmune in nature, I have heard good things...

No, I am healing the Autonomic Neuropathy (Dysautonomia/POTS) with supplements and diet. It is going very well! I was unable to sit up or walk. Now I can walk and do more. :) I have also had CFS for many years and that is doing really great.

To answer your question, my hands used to be cold and my feet also. I wear socks or SOFT UGG slippers at home. Even in summer, but the AC is on keeping me cool. With Dysautonomia, you cannot keep your temperature regulated. My hands and feet are much better now. I can go without slippers and sleep without socks now. I am improving.

I hope you can figure out exactly what is wrong. With Dysautonomia, everything automatic stops working so there are many problems. Adding that to CFS and wow, it is a mess.

This link discusses the test results:

http://xa.yimg.com/kq/groups/2161622...+RECEPTORS.pdf

This discusses further:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2536520/

It appears that you have a diagnosis now.

Use of anticholinergic drugs would perhaps accentuate symptoms.
Nortriptyline has anticholinergic effects. So you might discuss its benefits vs risks with your doctor.

Thanks for looking into this mrsD! That is a great correlation between the Nortriptyline and the Neuronal Acetylcholine Ganglionic Receptor. I don't think anyone else would have caught that!
YOU ARE AWESOME!

Hey Sally,
It looks like my Neuro is moving forward with sweat test and tilt table to prove out dysautonomia. I wish I could rely on getting better with just supplements, but I have been on the supplements/diet for a few months and I am still add symptoms each month. (I realize the supplements can take a while)
So, the first plan of attack is IVIG. I am apprehensive about it, but I feel like I am backed up against the wall. My quality of life is sucking wind right now!
Is there any advice you have for me of things to watch out for? Do you monitor your blood pressure daily for spikes and drops? Do you see certain types of doctors regularly?
I am going to look for a Integrative doctor (like yours)where I live and see what he/she has to think about my case. I am working to feed my mitochrondia, but I get very little exercise, so the axons dont have much work to do. I have been super athletic for 22 years, and now I can hardly walk. It is killing me inside, I must get back to some form of exercise or I will never get better. Just being able to get the diagnosis in relatively short time is a huge weight off my shoulders and I consider myself blessed. I feel so sorry for others who struggle with this relentless disease and never get a diagnosis or wait an exorbitant amount of time. I was lucky the the neuro did not give up, although he tried three times. I explained to him that I was not going anywhere and we were going to figure this thing out together. Not sure he really wanted my help, but he got it and he is being very helpful now. Guess we have learned each others personalities and we try not to step on each others feet now :)