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 :)

I'm glad you will get tested. Good you told the doctor to keep looking for what is wrong.

As far as the supplements. I have what half of people with Dysautonomia have, Autonomic Neuropathy as the cause.

So, supplements to treat the nerves in the whole body are the only way to heal. Most doctors have no clue about all of that. Integrative MD's have much more training. I am sure they vary though.

This healing is taking years. Dysautonomia is serious and debilatating. I was unable to sit up, I felt I would pass out 24 hours a day, dizzy, horrible nausea, feeling SO hot 24 hours a day, bp was HIGH, could not hear noise without being ill, fragile in every way. So many symptoms since nothing in the autonomic system worked.

I have had this for 3 1/2 years. It is hard to get better when you have it so bad. Each case is different. My doctor has not seen anyone with it this bad.

I hope you get an answer and begin treatment and slowly heal. There are some great forums if you ever need that.

I do see my integrative doctor to update him. He is SO happy I am so much better.

For "exercise" you need to flex your feet forward and back. That is very good. Also, you can lift your leg one at a time off of the floor or chair as you lie down or recline. You can move, you have to just find ways. I have many ideas. I just don't know what all you can do.


Your neurologist can learn. I learned a TON from reading. I have a textbook also, ha. The info is out there on Pubmed etc.

About my bp. I had to take Benicar for three years. My bp was so high. I take my bp several times a day. I am OFF of the med now!!!!! No more med! My bp is good now most of the time.

Dysautonomia
 

A man in my out door group has this and it is quite obvious, however he hikes, kayaks and this year has begun more extreme white water kayaking. I've even seen him stand up in a kayak while shaking. He's probably close to 60 and has a great attitude. So I guess whatever we get, we have to keep moving even when our bodies want to sit.

Some can stand and do things, some are bedridden. If the blood does not stay in the brain there is no standing or sitting. No choice there. Many faint 20 times a day.

Each case is different. Glad that man can do things. Those activities are impossible for most people.

The Autonomic nervous system is in charge of digestion, excretion, breathing, temp. regulation, blood flow, heart rate, on and on. All vitals and organs are affected.

The Autonomic Nervous System is supposed to keep our bodies in homeostasis. It can be very serious for most people. Every illness you have on top of it brings a relapse. Some find a cause like Lyme etc and they can improve.

Hey Sally,

I have been having the dizzy episodes about once or twice a day. So far I have been able to continue to do normal day to day things but today I had a pretty bad one. I am wondering if it is due to a sudden drop in blood pressure. When you were having a dizzy/nausea episode, were they all pretty much the same? Did you progress and have worse episodes after the first onset? I am wondering if this is just the beginning of these episodes and they are going to get progressively worse. Should I go see a cardiologist and wear one of the 24 hour monitors for BP? I feel like I am just turning over stones and finding new horrible symptoms each week or month. I feel like I need to get a handle on this aspect of the problem quick before I pass out while driving or something like that.
Thanks for your help!

For me, I had a couple of episodes in the grocery store. My hubby went to get the car and I saw sitting at the door unable to walk and he kept driving around the parking lot wondering why I didn't come out. ha We had no idea what this was yet. Finally I was able to make it to the car as he drove up again.

I was unable to stand when I was at the vet once. Thought I would pass out. That was very odd. I thought I must be nervous, but I have taken pets to the vet many times.

Then on my anniversary, we went out to buy a ring I wanted and that night everything stopped working. I could barely walk to the bathroom...All of those horrible symptoms of the failed autonomic nervous system.

Horribly dizzy and lightheaded. Unable to sit, but even in bed, I felt the same.

If you have this, it is possible it can get worse, but everyone is VERY different.

Yes, several times I got so ill, it felt the same. Then, a couple months later everything failed. There was not one second that I felt ok for years.

You should get a bp monitor and keep track of it. Might help the doctor. Some people do get the Holter monitors, yes. I hope you can get help soon. For now, drink a lot of water. It is the first thing a doctor should tell you since there is a lot of pooling of blood and that can't hurt to do of course.

If your dizzy spells are when you are sitting up or just walking around, yes, I'd get a monitor to see if you are in AFIB....

Dizzy when standing up suddenly, is different...orthostatic mostly.
This is more like the autonomic symptoms. Sudden change in
position therefore is characteristic of autonomic issues. But autonomic can also occur when changes of position are not present.

When the atrium of the heart goes into a fibrillation state, the blood cannot be pumped out properly and fainting or dizziness happens. This can be when walking, sitting in a chair, standing.
This is risky because while the blood is stalled in the heart it may begin to clot, and then the clots may end up in your brain as a stroke.

So yes, I'd get tested. Some internists will do the Holter monitor but you can see a cardiologist too, for this. A cardiologist will most likely do a tilt table test too.

Yes, do all of the testing, but don't expect a cardio or even a neuro to have ever heard of Dysautonomia or POTS. I got my heart looked at first since this presents as a heart problem. You do have to check that first.:)

Thanks Sally,

I feel really bad for you, it sounds like you really have had a rough time with this!
I have a heart rate monitor, but it only shows the avg and max heart rate. Guess I need one that shows the lows.

Thanks mrsD

Yes, my dizzy spells are when I am sitting up or just walking around or when I stand up suddenly, may be part head rush? My neuro has ordered a tilt table test, so hopefully that will show something. Also, it sounds like I need to make an appointment with a cardiologist soon.