bruc

Lyn, Will you be seeing Dr. Barboi at Rush? If you stay with Froedtert who will you be assigned to?

It does vary by state.

Close enough for you to drive and see him?

Is Dr. Barboi leaving?

Saw him in Milwaukee outstanding Dr.!

Julie, Great article -- Mast Cells and GI. They obviously play an important but yet not fully understood function in the GI tract. Differential diagnosis of Mast Cell Disorder is much like the cause of dysautonomia, elusive and difficult. Currently, Im on doxepin, and will soon be on Ery-Ped. May try the H1,s H2's you suggested. Cant do it all at once or wont know what's working. There is family history of mastocytosis(grandmother) hence the prior trial of gastrocrom and revisiting this diagnosis. Honestly, with the complexities involved in the GI tract; I dont know how anything gets sorted out diagnostically. Biopsies to define a myopathic finding require full thickness sample. From what I was told and read; this type of sample cant be obtained during an endoscopy/colonoscopy. Would require a laparotomy. Multiple samples aquired this way would bring significant risk; a risk that may yield nothing. It's extreme testing that would require full knowledge of the risk/reward profile. Unfortunately, Ive already had 2 exploratory lapyrotomies years ago not knowing a myopathy existed. Irritating for sure. Additional abdominal surgeries just makes things potentially worse. Yes, sample analysis definitely peaks my interest and curiosity but were alike in another way, dont see the point to all that risk. Nothing a sure thing in medicine. IF they are in they for something else then by all means. Miralax -- entire bottle in 24-48 hours does nothing. Bowel prep only thing that works and that can work one day then not for another 4-5 days or whatever. No pattern the bowel does whatever and whenever it wants to. Nulytely is what I use - often used for bowel prep for colonoscopy. BUT I dont use it the usual way. I only use the powder in the bottle. Use 17g daily mixed into a glass of water. Triple or quadruple up to get it going as needed. Still can go for days with no movement. What a life we lead but it could be worse. bruc

Im on alternating anitbiotics, augmentin, rifaximin and trying to find one other that will work. Miralax never did anything for me. Need something stronger, Nulytely bowel prep 17g of powder daily or more as needed. Cant take anything for the pain nausea or most anything else because majority of drugs slow the tract down. Mine is already bad enough! Have not tried H1, 2's empirically. Many years ago tried a 4 month course of gastrocrom, didnt do anything. That result combined with my lack? of MCAD symptoms leads me to eliminate a MCAD disorder. A muscle biopsy would be a great benefit to define my myopathy, however, there are multiple problems with them. For example, ability of the person taking the biopsy, pathological analysis often inconclusive, very invasive, have to take a specimen from the right place ie how does the specialist know where to take the sample from its a guess, in my case a full thickness biopsy would be needed which would bring added risks with pre-existing SIBO. Hope your samples conclusively define your disorder. Im very familiar with lying down. It is what it is just try and deal with the hand your dealt. The internet has been a godsend; opened the door to research on my own, finding those who can relate, and doing my homework on finding the "right" physician but even then the results can be disappointing. GI diagnoses, many disabling, dont receive the press and $$ that are needed to improve quality of life. Shocked to learn how few true GI motility centers there are in this country, a handful. Ramble away. Never know when a ramble might lead to the ticket I need. Bruc

Julie, Thanks for your efforts! Greatly appreciated. In-exact science that defines medicine; so much unknown. My autonomic test results; the degree of irregularities thats the question. Are the irregularities bad enough to cause this level of dysfunction? Have seen a number of test results where its clearly obvious that dysfunction exists, like your son's results. I must admit, like you said, that I dont know. I can pick up bits and pieces but the complexity and intertanglement of the sympathetic, parasympathetic and enteric nervous systems combined is overwhelming. Antibodies testing has been done. Not at Mayo Clinic. My experience with Mayo was not pleasant 10's of years back. After 10 days of testing there conclusion, psychiatric. Knew they were wrong then and now have accumulated evidence to prove it. I hesitate to recommend them. There NOT a sure thing! Your diagnoses sound like mine; a puzzle of rare abnormalities that dont fit together, confusion and lack of clarity reign large. Systemic myogenic GI DX (multiple manometry) and a lack of POTS leads to my confusion, neurogenic is the norm. Current testing is ruling out MACD and Mito disease. No sign of diabetes. After all these years, basically in a management and wait and see mode. Neither of which has an obvious course. Is your son on frequent antibiotic therapy for SIBO? Cant get rid of it. Will advances in medicine catch up to us and resolve our diagnoses? Constant severe abdominal pain is predominant ( imagine intense labor pain all the time) and which causes many other clinical complaints ie fatigue, poor appetite, nausea, headache, and others. Taken as a whole the deficits clearly affect quality of life and in fact your life revolves around them. Hopefully, research advances will benefit all of us in the future. If nothing else we can help others.

You recalled correctly. Extensive GI testing revealed systemic myopathy of the small bowel and esophagus, suspected to encompass the entire GI tract. Test results were done via esophageal manometry and antroduodenal manometry(24H). Myopathy clearly evident. Keep in mind the antro test only reveals a pattern which is suggestive of neuropathy or myopathy but cant differentiate between a nerve or muscle cause. Additional evidence for the myopathy was massive SIBO. Myopathy will cause lifelong SIBO trouble. Concerning auto dysfunction: GI didnt think so. In his experience, when a patient appears with auto dysfunction, the finding is typically neuropathy on antro manometry not myopathy, like you said in your post secondary to auto dysfunction. Primary muscle problem of unknown origin? Autonomics dysfunction diagnosis, dysautonomia, made based on test results; autonomic dysfunction localized to the GI tract and is responsible for the severe debilitating symptoms including abdominal pain, weakness, coughing swallowing problems, and constipation; lasting many years. If this GI dysfunction is secondary to autonomics, finding of myopathy on antro manometry is very rare. Ive been unable to find another patient with these findings and conclusion, antro myoapthy and localized. Autonomic testing. Complete testing as you described. Duration 3-4 hours. No antro probes in place, Hopkins may be the only place to do this. Results. Q-Sart abnormal diminished amplitude TST abnormal suggesting length dependent phenomenon Valsalva ratios normal Heart rate range to deep breathing diminished TTT -- systolic blood pressure drop of 13 mm Hg progressed to a max of 19mm Hg at 2 min then stabalized. Slight increase in heart rate above 17 beats per min above baseline. No obvious symptoms during test ie nausea sweating anxious etc except constant abdominal pain. Conslusion: Length dependent postganglionic sudomotor neuropathy associated with cardiovagal dysfunction, borderline vasomotor adrenergic dysfunction. Are they bad enough to be the sole cause? Dont know. Conflicting opinions. I do have an additional primary muscle problem however, its supposedly limited to skeletal muscle only and not smooth muscle. Pieces of the puzzle have slowly trickled in but they dont fit together. Im losing my will to keep up this fight. Hope your well. Happy New Year. bruc

So many here have been diagnosed with blood pressure and or heart problems leading to a dysautonomia diagnosis, so here is my question; is orthostatic or heart rate problems a concrete requirement for diagnosis? Can the dysautonomia be localized to just the GI tract? thx. bruc

I have this severe abdominal pain 24H a day every day of the week for years. Its just awful and debilitating. How did they detect it was cramping smooth muscle in your stomach and esophagus?

Its up to you to prove your disability. Documentation is the key.

What medications would you recommend trying to see if they did anything? Benadryl and zyrtec easy ones over the counter.

Are all cases of dysautonmia mast cell related?

Oral. Read that some people experience these symptoms with injectable too.