New To The Forum, Introduction

[Dyspatient]

I just joined the forum after using DINET’s resources for a while. I thought I’d introduce myself.

I’m 43, living south of Boston, struggling with progressing autonomic dysfunction. I recently had to leave my full time job. I'm trying to do some work from home, but find that even that is not certain. There are just too many bad days. I'm planning to file for disability this year and have already spoken to both an attorney and my primary care (who says he'll support my claim). I have a great primary care, he is one of the few doctors who has consistently stood by me and believed me in this struggle.

I’m looking to give and get support, advice, and for a place to connect with others who struggle with the same sorts of autonomic problems I do. It’s tough to feel like such an anomaly in other areas of my life, and I know from other forums that it helps to connect with people who can really relate from their own or a loved one’s experiences.

I have a lot of frustration dealing with doctors, from having untreated neuro-Lyme disease from 2002 – 2004; and from my experiences as a child who passed out often and was misdiagnosed for years. I was not allowed to drive until I was 22 because I refused to take seizure medication for what turned out to be orthostatic (convulsive) syncope made worse by a tendency towards hypoglycemia. When I was very young, I developed lactose intolerance and suffered for years with weight loss and pain while the pediatrician berated me and told my parents it was all in my head. I have a lot of residual distrust from these experiences, the topic of many of my appointments with my psychologist.

Just an fyi, I did see the forum rules about not defaming doctors and hospitals or calling them out by name online, which fits with my own personal approach as well. If someone asks me personally and off-line for my opinion about a particular doctor, I do share that. Online, I only name names if it’s someone I had a good experience with.

In 2012 (at 40), after a lifetime of joint pain and passing out, I was diagnosed with a connective tissue disease, Ehlers-Danlos Syndrome, type III but with some family history suggestive of vascular involvement and a mutation on the COL3A gene of unknown significance. At the time, the EDS diagnosis explained a whole lot of my issues, however, I have new and progressing autonomic symptoms, some of which are a little outside of the typical EDS-dysautonomia linkages. These include a loss of sweating in response to heat (2013ish) and polyuria (2014) – it’s not just an overactive bladder/frequency with little product…it’s like my kidneys just dump all fluids straight out into my bladder without bothering to do much else so I just constantly have to go and go a lot. My other autonomic symptoms include POTS (2013), gastroparesis (2013), insomnia (2013), night sweats (2004), and a lifetime of orthostatic intolerance with hypotension and syncope.

When I started having gastroparesis symptoms in 2013, I had a gastric emptying study that showed moderate gastroparesis. I pushed for an autoimmune autonomic ganglionopathy work up since that was consistent with my symptoms. It troubles me that I had to push for this. The GI doctor I who diagnosed me did not take the initiative in looking for causes and didn’t seem to take into account these other autonomic symptoms I had until I kept pointing them out. I finally (on my own) found a neurologist who would test for ganglionic Acetylcholine receptor antibodies and was told the test was “negative” but I can’t get the hospital to release the exact values.

The neurologist I was seeing at the time didn’t really offer an explanation of the autonomic symptoms after we had that negative result. These symptoms have progressed even since then (the polyuria is new this year). This neurologist has since left his practice, and this leaves me wondering if it’s worth trying to start again with a new neurologist or just leave this as “probably EDS” a the cause of my autonomic symptoms.

While I don’t want to start over with another doctor, I worry about further progression and failing to address this at an earlier stage which may spare me some loss of function. My resting heart rate is slowly decreasing. My last tilt table test showed POTS and I swear the increase in HR on tilt was more carried by the lower baseline that I now have (routinely in the 50s, sometimes dipping into the high 40s). I get runs of PVCs that scare the crap out of me but which I’m assured are benign. The polyuria is becoming another life ruling restriction. If I drink enough to keep my BP up (2 to 3 liters a day) I am in the bathroom every half hour with a full bladder, even with electrolyte supplements I just can’t seem to keep fluids in. In conjunction with the EDS, a full bladder means a lot of pelvic pain. I swear I’ve pulled a ligament just from going over a bump in a car while my bladder was too full – I was out of commission for days with enduring pelvic pain.

I recently started researching a new neurologist for the autonomic stuff, Dr. Hohler is well reviewed but when I called to see about making an appointment, they said they need a letter of referral from my primary care doctor, even though I don’t need a referral for my insurance. I’m trying to give my primary care a break right now, I had a bad Autumn and had to see him and contact him a lot. So I may eventually ask him to write this letter to try out Hohler, although again, I’m so ambivalent about seeing a new neurologist that I’m not sure it’s worth my or my primary care’s trouble to try.

[Bigskyfam]

First off... hello! What a great historian you are! I think you'll feel at home here. I've been here for over a year. Autumn gets a lot of us. I am still searching for causes/ treatments. I've been dx with pots by TTT. I've seen a specialist... Hard go geographically... And am being treated by a d.o at the moment. Rougher day today, so I'll post more later on. Love your pic.

[gjensen]

Dyspatient, welcome.

I would say that if you are not comfortable with your autonomic work up, then you should find a neurologist that specializes in autonomic dysfunction. Are you familiar with the Mayo panel concerning neurological auto immunity? I do not know what all your work ups include, or not.

I can relate with your frustrations.

I like your picture to.

[corina]

Hi dyspatient, welcome to our forum!

[looneymom]

Welcome to the forum. You've had a long journey with your illness. Thanks for sharing your story.

[Synthem]

Howdy, and welcome to the forum! I'm glad you joined and shared your story with us. I do not have the same diagnosis as you, but I can relate to many parts of what you said and I know a lot of other people will be able to, as well. Especially about the frustrations of bouncing from one doctor to the next. It can be exhausting. Sometimes it feels good to stop, take a break, and come back to it when you are ready. Also, the constant peeing. My gosh. Hydrating is worth it, but it would be nice not to pee every half hour, yeah? Best of luck if you decide to pursue the new doctor, and I hope we see you around the forum.

[Dyspatient]

Thanks for the welcomes!

gjensen, I am somewhat familiar with it. I haven't had everything in that set but I had some ANNA panels (1 and 2 I think? do they vary?), ANA, and g-AchR antibiodies. I always have a low positive ANA, and other than that, the only strange results were positive IFA on two anti-neuronal antibodies (Hu and Ri I think?) but they were both negative on the western blot. My primary didn't know what to make of that, and he and I would both prefer I see someone who works with these labs routinely rather than stick him with trying to track down which AchR antibody to order and then how to interpret. I did try to see an autonomic specialist, tried several times. Not much luck. Not sure if it's worth trying again or not.

Bird, "Sometimes it feels good to stop, take a break, and come back to it when you are ready." Yes, definitely. I do that now and then. I see it as a tactical retreat. Sometimes it's really necessary to keep your sanity.

[Psalm 23]

Hello Dyspatient and welcome to the forum. Thanks for sharing. I know only too well the frustrations of dealing with a long and complex medical history and with doctors who are unable to correctly diagnose and treat. Hang in there though. Your persistence will pay off in the end. It did for me. Best of wishes to you on your journey.

Janet

[Dyspatient]

Thanks Janet!

[Katybug]

Hi dyspatient! Welcome to the forum! I have been through over 30 docs since 2007. I now have a great medical team supporting me but it was a tough road to hoe, and, yes sometimes a tactical retreat was necessary. I'm particularly sorry about the childhood trauma of having doctors behave badly toward you....I, too, had that experience and all the while a hole was being eaten through my esophagus. It is really sad that children are left to suffer and be told problems are " all in there head" or "attention seeking" by doctors who just don't know the correct answer. Fortunately, my mom finally found a pediatric GI who was able to show me that there are caring and competent doctors out there. Please don't give up on proper diagnosis and treatment. It's important. We will be here to support you.

Katie