Autonomic Neuropathy...

[ana_22]

ok, so ive gathered that autonomic neuropathy is because nerves aren't working well. i think that i read on here that nerves can grow back but can take up to 3-5 years to do so. i cant find this info now.....can anyone clarify this?

so basically if your not sweating in some areas, potentially if the nerves were to grow back you would sweat in these areas again?

thanks!

[juliegee]

You basically got it right. I don't think the mechanism is well understood. My son had an entire year where he had trouble eating. He was so skinny, I worried he would die. Every time he ate, he got very nauseous and vomited. After lots of tests, the docs at Hopkins determined that he had an autonomic neuropathy of his small intestine. With meds, a specialized type of PT, and a strict non-dairy diet....he recovered. Now, he's eating me out of house and home :-) So, those nerves can re-grow(?) or become re-activated, etc. His recovery took one year.

Julie

[ajw4790]

Hi,

I think it all depends on a lot of variables. Including the cause of the neuropathy and the extent of the neuropathy. If the nerves involved are "just" damaged then recovery may be more likely, but if they are no longer functioning then recovery may not be as likely (at least a full recovery).

I was more or less told for myself that it will not get better and that they will not recover. But, also the neuropathy is getting worse and hasn't peaked, due to not finding out the cause of the neuropathy. If the cause is found and can be reversed then there is a higher chance of recovery of nerve function.

[juliegee]

I totally agree with AJW. The cause and extent of the neuropoathy clearly has alot to do with whether or not you recover and how long that recovery takes. Following gallbladder surgery, I, too, was virtually unable to eat. I lost over 20lbs (that I didn't need to lose and became incredibly sick.) I was in and out of the hospital all of the time. My GI told me that the nerves in my GI tract were damaged and it would take years for them to recover if ever. (Very depressing prognosis!) I followed the exact same therapy my son did (prescribed by his docs at Hopkins) and I also recovered in about 8 months. I can eat normally, once again, and wouldn't mind losing a few pounds :-)

My neuropathy wasn't DXed via complicated testing (TTT and antroduodenal manometry simultaneously) like my son's was. I just recognized that I had the same exact symptoms, and I shared my son's regimen with my internist, who applied it to me. I don't think that doctors know all there is to know about neuropathies, their cause, best treatment, and prognosis.

Julie

[mkoven]

Not quite related, but I had damage to my sciatic nerve after a bad disc rupture which I was told would be permanent. The doc said after six months I would be at maximal improvement. There are some teeny little quirks to that leg, but it returned to essentially normal after a year.

[ana_22]

thanks you so much for your replies!

is this the same for pooling caused by denervation in the legs....(or am i totally off track now!)

im just trying to link my symptoms, drs havent really found a reason for my POTS, and it feels like nor are they interested (Im from australia so far there havent been many Drs that have seen this condition, nor are there mega specialist hospital like mayo or vanderbuilt!)

my symptoms are intermittent nausea, alot of burping sometimes reflux, constant dizzyness/light head (that isnt bp or ear related) pooling, vision disturbances, heat sensitivity and of course tachy on standing!. so i thought maybe the nerves are damaged or something? what kind of tests would i need to investigate this?

by the way Macks Mom, i too am following a special diet.....no dairy, the only flour i can have is rice flour and barley flour (would this constitute a no wheat?) i make a yummy bread out of boiled potatoes, rice flour and barely flour!!! im hoping this diet will help. how long did it take you to notice improvement? and what kind of symptoms did you have?

[juliegee]

Hi Ana.

My son started the dairy-free diet first. He burped alot, got nauseous/vomited every time he ate, and had a really bloated tummy. He was also lightheaded and slept quite a bit of the time. The dairy-free diet was a part of his treatment, which also included: nexium, erythromycin as a GI prokinetic, florinef, Thermotabs (salt/potassium tablets), lexapro and a specialized type of PT called Integrative Manual Therapy. All of this was recommended by his doctor at Johns Hopkins, who specializes in treating kids/teens with autonomic issues. It took a year to tweak dosages, meds, etc.

After 3 weeks, he saw a marked improvement in tummy and autonomic issues on a dairy-free diet.

Your diet sounds promising. Do you notice that wheat causes you to have problems? My son lived on bread during this time. Onviously, it didn't bother him:-) He took tiny bites of a fresh baguette throughout the day with a vitamin water. White bread and white rice were almost all that he could tolerate. It sounds like you may have some GI issues caused by your autonomic stuff. Be sure to eat low fat, low fiber. Everything white. The opposite of what the experts say is healthy. Only eat fruits and vegs if they are mush. Applesuace, and vegs cooked really well. Turkey, chicken, chewed really well. Your food is probably having a hard time moving inyour GI tract. High fiber and high fat foods will be the worst for you.

I'm not sure what tests to recommend. I hope someone else will chime in. Our docs think that an as yet un-named connective tissue disorder (and MCAD in my case) cause our autonomic issues. Many folks never figure it out. We also have blood pooling, sometimes better and sometimes worse- no ryhme or reason.

I'm proud of you for fighting to get better. Try to exercise. Walking every day was also an important part of healing my son. I wish you all of the best and will keep you in my thoughts and prayers.

Julie

thanks you so much for your replies!

is this the same for pooling caused by denervation in the legs....(or am i totally off track now!)

im just trying to link my symptoms, drs havent really found a reason for my POTS, and it feels like nor are they interested (Im from australia so far there havent been many Drs that have seen this condition, nor are there mega specialist hospital like mayo or vanderbuilt!)

my symptoms are intermittent nausea, alot of burping sometimes reflux, constant dizzyness/light head (that isnt bp or ear related) pooling, vision disturbances, heat sensitivity and of course tachy on standing!. so i thought maybe the nerves are damaged or something? what kind of tests would i need to investigate this?

by the way Macks Mom, i too am following a special diet.....no dairy, the only flour i can have is rice flour and barley flour (would this constitute a no wheat?) i make a yummy bread out of boiled potatoes, rice flour and barely flour!!! im hoping this diet will help. how long did it take you to notice improvement? and what kind of symptoms did you have?

[dsdmom]

Julie,

You re the second person who has recommended IMT - I'm very curious as to your experiences with it and why your dr. recommended it.

Thanks!

[juliegee]

Hi dsdmom-

We learned about Integrative Manual Therapy (IMT) from Dr. Peter Rowe at Johns Hopkins as a part of a regimen to treat dysautonomia. He referred it to us via some Australian studies that showed it's efficacy with autonomic issues. It's a specialized type of physical therapy and is covered by medical insurance.

Mack (and I) always felt better after IMT. There are certain ways the PT puts his hands on your body to literally STOP a headache or nausea. We were taught how to do this for ourselves. When my symptoms were very severe, like nausea for instance, I could stop it with IMT; but it returned as soon as I stopped. Despite this, I think we both showed gradual improvements in all dysautonomia symptoms that we were able to maintain over time.

We also had homework where we had to do our own IMT for 15 mins. daily. For both of us, we were also given gentle yoga stretches to do in conjunction with the IMT. Mack is very inflexible/tight. The PT also worked with him measuring how far his flexibility increased after treatments- a lot.

After a year of IMT, Dr. Rowe was not satisfied with Mack's improvement. That's when he insisted that Mack begin doing the cranial therapy with an osteopath trained by Dr. Robert Fulford. Dr. Rowe actually recommended a specific practitioner. That guy was soooo strange. He actually went into trances while he was treating my son. Mack often felt much worse after his treatments. One time he actually got violently ill with vomiting and "D" on the way home. But, we were warned that Mack might have some temporary adverse reactions to treatments. He did! But, after recovering a few days later, he got to a stronger healthier level with each treatment. I think he only saw the osteopath 6-7 times. That treatment seemed to be much more effective in the long run than the IMT or manual therapy. (Although the IMT made him (and me) feel better in the short term.) Maybe it was the combination that was most effective.

Dr. Andrew Weil's book "Spontaneous Healing" has a chapter devoted to Dr. Robert Fulford and his therapy. You will find a better explanation there. Maybe you can google him to learn more.

My son was desperately ill and we were willing to do ANYTHING to get him better. It's been approximately a year since he stopped the PT and Mack has pretty consistently maintained his improvement. Because Dr. Rowe was so insistent, I overlooked my natural skepticism and gave the alternative PT's a try. They helped us and I've heard from a few others on the site who've also had good results.

Julie