Are they at least treating your current symptoms...GI & POTS? If so, with what?

Glad your getting the GGT done. How's your B12 & Vit D?

they arent treating anything! and I continue to feel like garbage everyday...

they have me trying the high sodium/fluid diet currently for POTS but it isnt doing anything, havent felt any better nor seen any improvement in the bp/hr numbers...

I actually read that if you have any issues with your aldosterone/renin hormones than the high salt/fluid wont do anything... sd like to have those looked at but the POTS neuro said to give the treatment a few more weeks

GI, gain not doing anything because they dont have anything to go on... I am taking probiotics but thats it. I have some nausea pills if it gets bad, but nothing for the general ill feeling, bloating, etc.

B12 has been pretty good high 400's to low 600's I think, D has been low, around 23...

I am really contemplating going to Mayo (even though Boston is suppose o have some great hospitals) with the workup I have already had and all my files, I'd think Mayo might be able to review everything and figure things out. Only problem is they dont take my insurance so it would prob be like $20k out of pocket... :(

So lost, not sure what to do... mayo? is there some place better?

I went to Mayo back in '97 and have been treated at Johns Hopkins since 2006 (still at JH now). Hopkins is by far (IMO) better for neuro and autoimmune related problems.

Too bad they are not treating symptoms after this amount of time. I understand masking symptoms making it hard to properly diagnose, but at some point you need relief.

Yea, thy said I could try midirone (sp?) for the POTS if I want, but that they arent sure it would really help any, and of course I am afriad of taking new drugs... but I guess its very short acting (suppose to raise my bp and someone make the HR jump less upon standing...)

As far as Mayo, are them and Hopkins pretty much the two options in the U.S. that take on "hard unsolved cases" and do a super condensed work-ups? If I am considering this route is there anywhere else I should consider?

I always thought Hopkins was more of a normal hospital scene like Mass General, where you can get appts. with specialists, and testing, spread out over months, whereas Mayo is a group of specialists all working on your case at once, getting multiple tests done each day...

Hi PG
 

yes, you are right about mayo clinic. They are a huge group of specialists, who converge on you. Lots of testing gets done very quickly. I received my diagnosis within three days. JohnHopkins also has a good reputation, but I think for DX on complicated cases, mayo is the place to go. I would recommend this place for anyone who has trouble getting to the bottom of the problem. You may not like what they have to say, but they do find out! ginnie:hug:

Midodrine is a vaso-constrictor and yes it's fast acting, but short lasting. It is helpful for the POTS by raising BP which helps the tachy rates. I take it along with Florinef (another common med for POTS). However, you said your BP doesn't drop upon standing...just that your HR increases. Is your HR high otherwise? What does it run on average not during events?

Mayo is best if you want work up all at once. It will be multiple tests a day. They are efficient for sure. What I don't like about them (and many others who say the same) is that they do not look outside the box. They have criteria for everything and if you don't fit 'clearly' within the criteria, then you don't have a diagnosis. This is especially true for autoimmune conditions...and even PN. This can make it difficult for patients like you with lots of negative tests but clearly something going on. I can guarantee you that they would never say 'you were just having a good day' with the gastroparesis. If the test is negative...it is negative.

You should get online and review each of their websites for info on comprehensive work-ups. Make some calls and consider insurance options. There are lots of good hospitals...but I only have experience with JH, Mayo and a couple in the Dallas area when I lived there.

I just went back to your original symptom list.

Seems you have several symptoms of chronic pancreatitis.

fast heart rate
pain in the mid back
nausea
bloating
weight loss
blood sugar abnormalities (feeling cold etc)

http://www.webmd.com/digestive-disor...s-pancreatitis

Since many of your initial symptoms remain and are gastrointestinal, I'd focus on that. Treatment is usually dietary, by avoiding alcohol, and avoiding a high fat intake.

Hi
I am sorry for all you are facing. When I came to the boards 5 years ago I was 28. Like you I had every dx test multiple times,traveled to hospitals out of state,many specialists. So though I know it may not help you are not alone. A few thoughts and I am sorry if you mentioned it.
First though I did not go to Mayo but I did send my records for them to review to see what they thought. You may want to call the neurology dept and ask them about that before you fly out. Also did you state are you being treated right now with any meds or other? I ask because out of all the neuros and other specialists my anestesologist/pain doc gave me insight and direction too. Now for myself I still dont have a why behind my peripheral neuopathy and I do have RSD to. I have other symptoms as you do such as eye problems etc as well. Obviously not knowing the why behind makes it harder to treat.
Ok sorry now to my ?s before you stated you were healthy but can you think of anything even if it was small such as being sick a lot, did you fall,injury,break anything, meds or other you were on?
I wish I could offer more suggestions. I am not an expert like others here on medical but I do know what you are going through the frustration,fear,pain,confusion. On a side note make sure to keep all your records so you can take them to the next apt. Also anything you have tried meds or treatment wise. You may want to keep a diary too of pain and symptoms. Hang in there

When resting or not standing, my HR is usually normal to low (depending on the time of day) during the day resting may be anywhere from 65-80, at night while laying in bed, its usually 50-60 tops, sometimes if I am real tired it'll be around 48/49...

Usually when I do my a.m. bp/hr log, my hr will jump from 60-65 to 90-105 range... then there are some days when it'll have a normal jump around 20 and others when the jump will be 50... no real rhyme or reason that I can see.

I would like a work up all at once, and it seems like Mayo is the only center that works like this? maybe cleveland clinic? but with all my various system involvements, I am thinking mayo may be the place for me...just gotta try and find a way to fund it.

I will mention this to my gastro, I see her Thurs. for a colonscopy/endoscopy double dip... I have a feeling she will likely say its not relevant because dont have any stomach pain, or enlargement, although it makes sense to me, i certainly have a lot of the symptoms...not to mention the GI stuff could be totally unrelated to the SFN/autonomic stuff (seeing as how the GES keep coming back ok) and the GI stuff far predated the other symptoms.

Hi, thanks for the kind words, I am currently not being treated with any meds and actually have never taken any meds in my lifetime, except for some prilosec years ago for heartburn.

Thinking back prior to this, I would say starting last July 11' I began to get sick kind of often with what felt like mini-flu (with no temp tho) or maybe mini-colds once a month, or a day here and there when I just didnt feel right, then a few more severe episodes in Oct. and Dec. 11', then the big downhill episode in Feb. 12' and a week long one in March when I was really sick with sore throat, congestion, fever, malaise, for a week, felt like a true flu...

In the years prior to all this I felt pretty good for the most part, was in law school, had a lot of stress, had some anxiousness sometimes, headaches every now and then, more milder GI problems...

On a side note...saw yet another Neuro today, this time at Mass General, it was a waste of time...

Did neuro exam again, said everything was normal, except he noted there may be some slight weakness in my big toes? no one ever mentioned that before, also mentioned had slightly high arches in my feet and asked if I was clumsy or non-athletic when I was younger... I said no, as I played soccer and basketball, all as a youth and throughout highschool..

Reviewed the tilt and brushed through some other stuff, said I'd had a good workup, he said slim possibility of neuropathy, because although the bipsy shows some reduced fibers at the thigh, most all people would present with sme sort of pain, numbness, etc... but did not rule it out, said I may have what appears to be strictly autonomic neuropathy, with no sensory or motor involvement, just autonomic, and within the autonomic the only abnormality was in regards to the tilt test, other systems were spared.

Doesnt really think the GI stuff is related, thinks there is two seperate issues going on. Didn't order any more testing or provide any more insight, treatment, etc, just sent me on my way....useless, said to give him a call back if I notice my sis or mom have high arches.

Off to get an EEG done right now...they said it'll take 3 hrs. should be fun!