Hi Anne-Marie,

I was so glad to receive your email. I have a niece that is suffering also, and I referred her to the site last night after I found it. I had 23 emails when I got home. I've never had that many in a day!

 

Hollow Visceral Neuropathy involves the "hollow" organs. For me, it affects my heart, bladder and intestines. This is a newly identified problem that is described as genetic in nature. The symptoms are seizures in these organs. I really don't have problems with my heart, but I do have seizures in my bladder and intestines, which give me the most problems. They are very painful. I take Klonipin, which makes me sleep a lot. My intestines do not function properly. One portion can be having seizures, which in their worst state produce diarrhea, the next section of the bowel can be constipated, and the next may have a lot of gas. Some patients with this actually lose parts of their intestines due to severe seizures that cut off the blood circulation long enough for it to die.

 

As I said in my letter, I also have Interstitial Cystitis in my bladder, which I used to think was the most painful thing in the world. It has now faded somewhat due to the severe pain I have in my bladder. I had an interstim implanted about 10 months ago, and it helps when my bladder pain is too great.

 

I am currently taking Actiq for severe pain, but I am about out, and can't afford more. I was disabled on the job and am retraining at the local college. My hubby was laid off, so we don't have any insurance. I'm afraid I'm going to be in a bad way very soon. I went to Mexico to try to get some of my meds, but they didn't have them.

 

You mentioned you suffer from RSD. I am not familiar with the name. What is it?

 

Thanks for writing and please write back soon. It was nice meeting you!

 

Kimberly

Hello Dan,

 

Thank you for writing. I'm sorry I have taken so long to respond. I have been very busy with college, studying, caring for my family, and being so ill. I am currently attending the Victoria College in Victoria, Texas. I am completing my prerequisites for the RN, BSN program. I received a 4 year scholarship through Texas Rehabilitation after being injured on duty during a violent arrest of three subjects intoxicated on methamphetamine. Bad stuff. I have been a police patrol officer for 16 years, even with my illnesses. Had I not been hurt, though, I would probably be medically retired by now. My illness has progressed at an alarming rate in the last year and a half.

 

You are not alone in your lack of knowledge concerning my illness. It is a genetic problem I was born with as a complication of being an Rh baby back before there was a treatment for it. I was the third of three Rh babies, and thankfully the last. I am the only one affected medically. Both conditions are caused by the genetic factor. I had endometriosis as a young woman, and lost a child as a result of it.

 

This disorder is a fairly new problem that was first discovered by a gastroenterologist, Dr. John Malathias, in Houston. He uses an instrument, which he and an associate developed, to measure electrical impulses in the intestine. To measure a patients electrical activity, the patient comes in after fasting and lays down in a comfortable recliner, and electrodes are placed about the patients stomach. The patient is instructed to lay perfectly still for half an hour. After half an hour, the patient is given something to drink and instructed to lay back down and remain perfectly still for half an hour. During that time, the instrument measures the increase in electrical activity in the intestine. It produces a printout similar to that of an EKG. A normal readout should produce identical peaks and valleys. In a patient with Hollow Visceral Neuropathy, the peaks and valleys do not match, indicating seizure activity in the intestine. In reality, these uncoordinated electrical charges result in poor intestinal efficiency. A patient can simultaneously have gas, constipation and diarrhea in several places in their intestines. This all produces pain, occasionally moderate to severe, depending on the patient and their state of health, (or lack of). Long term, it can result in severe weight loss, obstructions, impactions, the death of sections of intestine due to a constricture of the blood supply caused by severe seizure activity, excess flatulence, nausea, vomiting, and weakness. A terrible mix.

 

It was explained to me to be caused by a sensitivity to insulin. Foods that cause the body to create insulin are to be almost totally eliminated from the diet. That includes all breads, sugars, margarines, red meats (including pork), carrots, corn, pastas, potatoes, etc. The diet is much too strict. It is  too strict for me to follow, as I am allergic to dairy products, which are an unlimited food item on the diet, and consists of a large portion of the allowable foods. Therefore, I suffer more than others. The doctor is not very understanding when I come in with problems. I have tried to explain my problem with the diet, but he is not very understanding. I am so tired of having unflavored 3 minute oatmeal and eggs for breakfast I could scream, but that is all that is allowed. He tells me to stop thinking of breakfast as breakfast, but consider it as I would any other meal. He suggested I try more recipes using chicken or fish. ( The only meats I am allowed. I am SO tired of them after already having them two meals a day for almost 2 years now. They are OK, but my body craves more of a variety.)

 

He explained that the Interstitial Cystitis (IC) is a symptom of the HVN. According to him, endometriosis is an early symptom of this disorder. I imagine if this is true, many women have it and do not realize where their true problem originates. This disorder is so newly identified, very few gastroenterologist's recognize it, and treat the symptoms, not the problem.

 

I just saw my pain management physician last week. He has prescribed Fentanyl 50mg. patches to treat my pain. THEY ARE WONDERFUL!!!!!!!!!!!!!!! I have a life again. I was sleeping almost 18 hours a day prior to using them. I am now up and working out in the yard, walking, and enjoying my family. I feel SO much better. Fortunately, these patches are covered by a patient assistance program. They doctor gave me the forms to fill out, and I will return them on Monday. I also sent in forms to receive ELMIRON, which is a drug used specifically to treat IC. I was told that a side effect would be the loss of my hair, but so far I have only lost about half. My hair was really thick, so it was actually a blessing considering the heat here. I plan to start contacting the other drug manufacturers this week.

 

Thanks for writing me. I'm sorry it took so long to write back. I am currently on the Dean's list, and stay there by studying a lot. There never seems to be enough hours in the day, but yet I don't think I could handle more if they were offered. I am so tired at the end of the day.

 

Kimberly