A Month Of Setback

[davecom]

This is a venting/crying on your collective shoulders' post; so let me say ahead of time that it is in no way valuable towards the discussion, but simply a recounting of my experience the last month and search for new direction.

In June-July I weaned myself off midodrine, atenolol and my headaches dramatically improved. My gastro symptoms seemed to be resolving and I cut down on the amount of carafate I was taking. Of course, off atenolol my heart rates initially went back up, but after a withdrawal period, I was really excited about the progress I was making. I even managed to stand still for 10 minutes at a time with heart rates doing a sine wave between 110 and 80. Initial stands started to top out at 120, and sometimes, very ocassionally, didn't even break 100 which was incredible. My resting heart rate returned to around 70/high 60s sitting.

I had this sense I was really starting to get better - that the doctors were right that my condition was post viral and I was going to recover on my own. I increased my walking to 105 minutes a day split between 6 walks (with the longest 35 minutes at a time), got biking up to 35 minutes/5 days a week, and continued some light weight lifting. I introduced a couple new foods back into my very restricted diet. I started on some work projects again. I thought my situation had finally become fairly manageable and was in this upward trajectory.

Every conceivable blood test for autoimmune disorders had come back negative. Of course my skin biopsy showed extensive small fiber neuropathy and some complements deposits as I talked about in another thread.

Then, throughout the month of August things have gotten worse and worse. I had a new symptom suddenly appear - burning/tingling in my hands and feet. Over the course of a few days it went from nothing to severe. Classic small fiber neuropathy. I started having extreme acid again and constant pain in my throat and back (all along the esophagus). I started losing weight again (dropped between 5-10 lbs so far depending on when you measure it). I started alpha lipoic acid and bentofiamine (B1 derivative) for the neuropathy. The gastroenterologist, my 5th and a supposed esophagus expert, is doubtful my constant excruciating throat and esophgaus pain is gastro related - atlhough I know it is... he's making me see an ENT even though I saw one before who looked in there and said I have severe esophagitis from reflux. I failed PPIs for the millionth time (severe headaches, worse POTS - I still think they had a big contribution to me getting sick in the first place even htough my initial use was only 10 days last october). My heart rates have gotten worse - back to often seeing numbers in the 120s, sometimes the 130s. I've had stands at 147, 140 multiple times. I tried clonidine and it didn't really help me. My feet are experiencing extreme coldness a lot and so is my right hand again. My left hand has started to turn red while walking like my right hand does.

So... I have the appointment with the ENT, a follow up with the gastro after that, and a follow up with the neurologist. I think they basically have no idea what to do with me. I have a geneticist looking into my genes but that will take 5 months. I am going to push for a lip biopsy for Sjogren's and I have a prescription from my PCP for a glucose tolerance test which I will do. My most immediate problem is this extreme pain in my throat and esophagus and it seems I'm pretty much on my own with it. I am trying everything - EVERYTHING. I have failed every PPI. I am stuck with famotidine and carafate which for some reason has stopped working. I'm ready to go for a surgery but someone should help me investigate my acidity levels, etc and see what is really causing it - I'm upset because I've been through 5 gastroenterologists and all they do is say well since I had a ton of testing done when I first got sick last fall there's nothing to do for me now... well I've suffered with this pain for a year and when I have esophgus cancer it will be their blood on it for not doing further testing and figuring out what it is (and why I have weird anomalies like my gastrin level being 0).

Rant over. Just frustrated. I'm still exercising, taking supplements, walking, following an extremely limited diet, and researching. I still think I will one day be healthy again, but I doubt it more. I'm doing everything I can for myself but I still have no idea why I went from healthy to "striking" neuropathy (causing POTS) over the last year, nor what the heck is going on with my stomach/esophagus. I feel once again at the mercy of doctors who don't 100% believe me, a position I hate to be in.

[dkd]

I have pain/tightness in my throat and upper stomach and wonder if it's just from the neuropathy (thought I haven't been diagnosed yet). I had an upper GI and the dr said I didn't have an acid damage.

Sorry you've had a bad month. Seems like you're doing as much as you can, but I know it's frustrating. I feel like I'm always just waiting for the next doctor's appt. and then it's a let down when it's over.

Hang in there!

[Becia]

I just want to give you a ((((((((HUG))))))) . I don't have advice except its been bad all around for me too, but sometimes, you just need a hug and someone to tell you it's okay, we understand.

[lfreem02]

I have been dealing with acid reflux, and other gastro issues for twenty years. I am not sure if it has anything to do with my Dysautonomia. Have you had an upper endoscopy? A biopsy can be done to determine if you have anything serious going on.

I have Barrett's Esophagus, which causes no symptoms for me at this time, which is why my doctor has to keep a close eye on it. It can progress into cancer without me knowing. I did experience pain last year as a result of the Dysautonomia, and my gastro was able to eliminate any connections with the Barrett's or acid reflux issues with the pain I had. I have had to take Nexium for years, but haven't needed it for over this past year, because I elevated my bed for the Dysautonomia.

My Dysautonomia symptoms started December 28, 2011. My doctor thinks it is hereditary, and that a virus I had at the time triggered my flare. I am still on medication and have milder symptoms, but I do have set backs that cause old symptoms to return. The past couple of weeks have been really bad with fatigue. Neuropathy symptoms have also returned in my left arm and both legs. I live in the Atlanta area, so I think the heat and humidity has a lot to do with it. I am hoping for a long cold winter. I am also going to try to visit family in Canada this winter. The weather there really agrees with me.

Good luck!

[Relax86]

Dave ~ that's a tough road you're on. I just wanted you to know that I did get better t/o flares and set backs. Hang in there and believe it can happen. Also, I got better with very little medical intervention since most of my testing came back negative. I don't have SFN but I had a few other things pop up. Mostly, just do your best to stay positive.

[Chaos]

Sorry to hear you're back in the thick of it again. So frustrating when you've had that taste of "almost being close to somewhat normal" again. Right back there with you, so I truly feel your pain.

Have you ever tried digestive enzymes? I know it sounds counter-intuitive with your reflux, but I have read several places where having hypo acidity will cause the same symptoms as having hyper acidity and taking ppis etc will make everything worse. Just a thought you might want to look into and see if it might match up with your symptoms at all. Not something the docs usually bring up though.

[Psalm 23]

Hi Dave,

I'm so sorry you are not improving. I know how incredibly frustrating and discouraging it is in dealing with the ups and downs of this disorder. Up until a couple of years ago I was having a problem with regurgitation and esophageal burning. After having an esophageal manometry test I was diagnosed with esophageal dysmotility. Since starting on mestinon and clonidine ( I realize the latter did not benefit you ) the problem all but disappeared. I'm not sure at this point which of the two meds seemed to have addressed the problem. Could your problem be some type of esophageal dysmotility ? In regards to your SFN pain. I hope you realize some benefit from the ALA as I have found it so helpful. Another rather unconventional thing I do that helps is apply lidoderm 5% patches to the bottoms of my feet. Hang in there.

Janet