[Dejibo]

ANS or automomic nerveous system affects the stomach, heart rate, blood pressure, and other things. Things you CANT control. You may be able to meditate your BP lower, but for the most part its automatic or autonomic.

CNS or central nervous system affects motor skills. Things you do, like...move your leg, or walk or balance. For the most part, things you can control, unless something is damaged.

Many know I have recently had a large stay in and out of the local hospitals with a gastroparesis or "frozen stomach" and while some guessed "its MS" others said "no way! MS only affects CNS not ANS. There was this huge debate, and at times, I felt them to be guessing and fighting amongst each other about the outcome.

I saw the big city hospital yesterday and the MS specialist and brain surgeon that I saw said while it can happen, its rare. He is saying that its more likely that the IVSM triggered my myriad of symptoms, but he is asking for me to do some special tests to see if my autonomic systems are being affected by my MS.

I dont know the full details, but he said it involves a tilt table, and BP cuffs. Things to see if my heart rate zooms with little provocation or if other things go haywire when pushed.

While in the hospital, I had a high resting heart rate most of the time, and it took nothing for me to zoom to 130 or 140 without exercise. My BP would go from 90/60 to 150/100 without reason. That finding was enough for the surgeon, MS guy to say "maybe your ANS is affected"

Has anyone ever heard of this? if its bizarre, or strange, you can find it in my world.

it just seems that I have several folks stumped with the whole gastroparesis thing. I am told it DOES happen to MS patients, and some feel its more common than others, but for the most part, its a diabetic thing. Since I am not diabetic (thank God, and knock wood) its really odd that I would get this Gastro thing. I HATE this stupid disease!

[agate]

Yes, I have heard of this.

There can be MS lesions in the brainstem, which controls autonomic functions like breathing and blood pressure.

I've heard of several people with MS who had gastroparesis.

[SallyC]

Originally Posted by agate

Yes, I have heard of this.

There can be MS lesions in the brainstem, which controls autonomic functions like breathing and blood pressure.

I've heard of several people with MS who had gastroparesis.

Absolutely, I have also heard of this and seen it. I don't, however, know of the treatment for this type of MS.

My very first Neuro/neuro surgeon, in the 1970s, did perform a brainstem operation on a family friend, so this is not a new type of MS. I never followed thru on how it all turned out, but I know that she did improve.....and then I lost contact.

Do I remember you mentioning having a Glioma? Could it be in the brainstem? Is an operation an option? I don't know?

[PolarExpress]

Originally Posted by agate

Yes, I have heard of this.

There can be MS lesions in the brainstem, which controls autonomic functions like breathing and blood pressure.

I've heard of several people with MS who had gastroparesis.

Same here. I learned this back in the dark ages when I was first dx'd...Location, location, etc..

[Dejibo]

My glioma is on the right frontal lobe. I dont think its bugging anything. They are just noticing weird things on me like my BP will go crazy low, or crazy high without provocation. Then my resting heart rate can be over 100 sometimes. wierd things. now my stomach has stopped working. They are thinking I may have this autonomic issue with MS.

Have I mentioned how much I hate this disease?

[FinLady]

I'm so sorry to hear about this, Dej.

[ewizabeth]

I hope that whatever is causing it will slow down or stop. Maybe it will be like a relapse and it will go away never to return again. I went through many symptoms for years I thought I was stuck with and they're mostly gone now.

[Lady]

Originally Posted by Dejibo

They are just noticing weird things on me like my BP will go crazy low, or crazy high without provocation. Then my resting heart rate can be over 100 sometimes. weird things. now my stomach has stopped working. They are thinking I may have this autonomic issue with MS.

Have I mentioned how much I hate this disease?

Dej, I have all of the above, had to deal with it since 1995. My BP went like yours, all over the place for no reason, and BP meds did nothing to change it. At one point I was on three BP meds at one time. Now I am on none and just avoid salt, on table and in food. BP okay, level at the moment.

As for the stomach, I told you my colonoscopy, Gastro doctor said, I have no MOTILITY in my stomach or intestines. I have to wait for gravity to do it's thing, or take Magnesium, one, two or three tablets or more, 250 mg daily.

Sometimes food doesn't even make it into the tummy. Takes forever. I do tummy rubs, in circles, like for a baby, to get the food to go down and moving along the track, manually. I know my ANS is broken. My body Temperature being low and not adjusting to heat, non sweating, all the ANS and more stuff too..all broken.

[Dejibo]

Lady! we could be twins!

No one has put me on BP meds because it always comes back to normal at some point. It can go to 60/40 or 150/120 in ten minute span of time. My resting heart rate is normally 100. I always seem to be in marathon mode. they did a stress test, and it took less than 60 seconds for me to get my heart rate to 160. My poor tummy! There is something called nux vomica that is helping me. The reglan when I take a pediatric dose does help without the tartive dyskinesia. the jerks, and RLS. There is now a black box warning on that drug that those tics,andjerks can become permenant!

I am taking buckets of miralax, colace, and a senna laxative. I take a double dose 4 times a day of miralax, and then 300 mg of colace, and at least a triple dose of senna and I am still constipated! They want me to move the miralax to 6 times a day with double doses. They assure me that miralax isnt absorbed by your system and the worst that can happen is that you get diarrhea. I look pregnant! Im so backed up! (sorry to be so graphic)

I am managing to keep about 800 to 900 calories per day of what foods I can keep down, as I am making them high in calories, and ...yep! I am gaining weight! I think its all the bloat. Must fix this! its miserable.

Thanks for all the good support, and cheerleading. I am wondering IF this is ANS MS...what can they do for it? Is there an intervention?

[tkrik]

I, too, have terrible stomach issues (hypersensitive/excitatory nerves in the stomach lining). To me, it makes perfect sense that I would based on where my spinal lesions are (T5-T8). There is a disruption in circuitry, so to speak, an it makes sense to me that anything along the nerve path could go haywire.

Also, the vagus nerve is one of the cranial nerves. Any damage effecting the vagus nerve, IMO, would result in possible ANS dysfunction. I think any damage to the CNS, or certain areas of the CNS, could possibly effect the ANS.

I really do hope they find something to help you with these issues as you have had such a difficult time of it as of late. I will keep you in my prayers.