Autonomic Neuropathy?

Gastroparesis is caused by partial paralysis of the stomach, via damage to the vagus nerve. In many cases this damage is idiopathic, meaning doctors have no idea of what caused it. Mine gastroparesis has earned itself that idiopathic label. But as I’ve been feeling worse, I’ve been looking into causes and symptoms of vagus nerve damage and think that the damage to my vagus nerve might be more extensive then just in the region of my stomach.

According to the Medline Plus definition autonomic neuropathy is a collection of symptoms resulting from damage to nerves in the autonomic nervous system. Chief among these nerves is the vagus nerve. And I have many of the symptoms listed on the Medline Plus site. It would explain why my pupils are occasionally different sizes, why I physically startle at even the tiniest things (like the windshield wipers I just turned on, or someone sneezing), my heat intolerance, my “not asthma, asthma”/breathing suppression, why I don’t notice I need to pee until I almost can’t hold it, why I choke on my spit so easily and feel like something is stuck in my throat sometimes, and why I sweat like I need to cure the drought.

Which, if is the case, what caused my vagus nerve to be so damaged? It seems awfully widespread to be caused by the degeneration in my cervical spine- but could that be it? Could I actually be hopeful that I could address my cervical spine (which up to this point has been blown off) and maybe fix some problems? Or should we be looking more closely for something else that could be causing damage?  I really don’t think my vagus nerve is just going to become damaged without some sort of cause…

But of course all of this requires I talk to my doctor about it- and I honestly don’t know if I have that kind of strength right now.

I hate bringing something up and getting blown off. Having tests come back repeatedly showing nothing. I hate breaching a subject and feel like I’m being judged for not being satisfied with the diagnosis I already have- like I’m seeking out more, when I really just feel like something is still unaccounted for, still missing, from the “what is wrong with me” puzzle. I hate the vulnerability of not being able to do anything if my doctor doesn’t agree with me and turns down my request for more tests or when a specialist declares they’ve done all they can for me and won’t see me again. I have insurance, I have money, I am desperately trying to do everything I can to get better, so why are you making this so difficult? Why are there so many gatekeepers in medicine, whom I must prove I’m worthy to be seen by, to be taken seriously by, to be believed?

 

Apparently I need to discuss this with my therapist on Wednesday. Hopefully then I’ll be able to approach it with my internist and maybe get back to the neurologist. Maybe then we’ll make some more headway and I won’t feel like my world is always collapsing on me.

Maybe.

 

 

 

 

We’ve got nothing.

So the arm EMG/Nerve conduction test came back normal. Actually she was amazed I don’t have an evidence of carpal tunnel, given that I’ve been a student for so long. I do have a tiny bit of nerve slowing in the one nerve that goes around my left elbow, but that’s apparently very common and even if it wasn’t – it still wouldn’t account for my symptoms.

So we have nothing. Dr C rolled away from the EMG machine, and told me frankly “I have nothing to diagnose you with.” She said we could try to manage my symptoms, but she got the impression that I would rather know what was going on and work to treat that rather than just manage symptoms. Which I totally agree.

I still have my neuropsychologist appointment on Friday. Dr. C said unless some new symptoms start, or the appointment reveals I should have some cognitive therapy, then I won’t need to see her anymore.

If the neuropsych appointment doesn’t show anything, I don’t know what I’m going to do. I HAVE been having issues and difficulties. At least I feel they have been difficulties, and I haven’t been getting what I need or even want to get done done.

I can’t imagine all of this is in my mind. And I really don’t think I’m just being lazy or avoiding doing work, But nothing is showing up. What if nothing shows up on this? How do I keep from doubting myself, let alone convince others to keep looking for what is going on?

This is really putting the “invisible” in invisible illness.
And as much as I’m happy to NOT have something horrible show up/ to be able to rule out things with clear tests, it is so terrible not having any indication of what is going on.

Neuro, Neuro, whoa baby, we don’t know…

A MRI told me just the other day
That my brain looks quite okay.
We don’t know what it could be –
That’s causing all these symptoms in me! (To the tune of Pharaoh, Pharaoh.)

I haven’t really talked much about what’s been going on lately. I’ve been working with a neurologist to try to determine if a range of symptoms I have are neurological – and if so, what is causing them. These symptoms include migraines; vision flashes, black spots, and random onset blurring; tingling and numbness in my extremities; occasional numbness in the right half of my face; occasional burning in the other half of my face – like a really bad sunburn;  some cognitive difficulties; occasional weakness; occasional involuntary muscle spams; and a few other things that I’m sure I’m forgetting right now – its getting hard to keep track.

So far we’ve done a ton of blood work, a spinal tap, two MRIs (brain and cervical  – both with and without contrast), an EMG and nerve conduction study on my legs, and thorough ophthalmologic exam.

What we’ve turned up is basically nothing. The Lyme Western Blot from my blood work came back positive- but only for a short term infection, not long enough to account for my symptoms. We think it’s a false positive, but I started a round of doxycycline hyclate to treat it just in case. The doxy makes me super nauseous, which is fun.

The spinal tap panel for MS came back absolutely unremarkable, as did the brain MRI. The cervical MRI report showed some degenerative disease, but it doesn’t account for my symptoms either. The leg EMG and nerve conduction test showed no degeneration in my medium or large nerves, and normal muscle reactions. Small nerve damage can’t be determined by the EMG though, so we don’t know about that one. Only a skin biopsy can show that, and we aren’t sure if that would be useful at this point.
The ophthalmologic exam concluded that it is highly unlikely that I ever had a vitreous detachment – which we suspected caused my migraines, ocular flashes, and floaters 4 years ago – and that since my eyes look perfect, it is likely that these symptoms have been neurological all the time. The ophthalmologist did mention that I may have a hemorrhage 4 years ago that caused the sudden 100s of floaters (thankfully I still only see 1 now), but there was no way to tell now.

I have and EMG and nerve conduction test for my arms on Tuesday, and see a neuropsychologist to assess my mental functioning on Friday.
If those don’t turn up anything, I don’t know where we’ll go from there. Dr. C, my neurologist, has mentioned sending me on to a rheumatologist or to tertiary care at UVA, Wake Forest, or Duke, if we can’t figure out what’s going on.

In the mean time, I also have to find a new PCP associated with the student health center, as Dr. B2 – who I loved so much -has left to have her own practice. Without saying anything to me. I was actually quite devastated when I tried to contact her and she was no longer in the system.

I hate when doctors leave me. Especially when they’re one of he few who has actually been helping me, listening to me, and treating me like I am actually a competent person who is informed about my health.
I guess that comes with this chronic illness territory…

Spinal Tappppppp

I finally got the orders from Dr. C, for all that testing she wants done. I picked them up on Friday, promptly went over to the student Health Center for my administrative referrals, and then called where I could to schedule the appointments.

The neuropsychologist office is the only appointment I couldn’t make, as Dr. C’s office has to contact his office (Dr. H),  then send him all my file, and wait for his office to contact me to schedule. I expect that one to take some time.But I’ve gotten all the others set up. I’ll see the ophthalmologist, Dr. F, late in October (the 23rd). The MRIs (brain and cervical spine – both with and without contrast) will be on the 13th; I expect to be in the imaging center for a long time that day. And the spinal tap will be on Wednesday. That’s right, September 30th. I really didn’t expect it to be so quick.

On Tuesday, 29th, I have to do a radiology consult, before the actual procedure, and then at have to be at the hospital at 8:00am the next morning.
I’d be freaking out if I had anytime to. But as of right now I have a ton of homework due Monday, an appointment with the reproductive endocrinologist Monday (Dr. E-H; but this appointment may or may not be canceled, as she had a family emergency out of state come up on Friday and her office was unsure if she’d be back in time – if she isn’t then my appointment will be on Friday of the same week.) Class from 1-4pm on Monday, which I may or may not make it to depending on the doctors appointment. The radiology consult on Tuesday. The spinal tap on Wednesday. Maybe a doctors appointment on Friday… and I’m sure a ton of homework I’ll have again for the next week.

Hopefully I won’t get the horrible headache that affects 25% of people after a spinal tap, where you have to lay FLAT on your back for a few days to clear up. It’ll be just my luck that I will though, so I’ve taken off for the week, just in case.

Any last minute tips for preparing for, and recovering from, a spinal tap? This is the one test that has me incredibly nervous and anxious; the thought of a giant needle in my spine is terrifying…

Dr. C

I’m incredibly exhausted after this long day, but wanted to give y’all some brief updates.

I met Dr. C, the neurologist, this morning. Her office is slow, but she is wonderful. She listened to my health saga, then did a neurology test – testing reflexes, my eyes following her finger, if I could hear her rustling her fingers at different distances from my ears, having me squeeze her hands and push against resistance, asking me some basic recall questions, and walking across the room in various ways- normally, on tip-toe, one heels with toes up, and heel-to-toe like on a tight rope. She also took a peak at my optic nerve.
She wants me to see an opthomologist again, and gave me a few names of doctors she’d prefer I see, so I went by the student health center after my appointment to get a referral. I’ll give Dr. F’s office a call tomorrow.

She also gave me an order for lab work – quite a lot of it, including ANA, metabolic panel, thyroid panel, various vitamin Bs, vitamin D, a lyme test, and a few other tests I had never heard of. The student health center will be doing the blood work tomorrow, since I need to be fasted.

Dr. C is also working on an order for an MRI of my brain and neck, with contrast. A spinal tap. An a consult with a neuropsychologist for cognitive function testing. I’ll have to pick up the orders and take them to the student health center for referrals from them, so that the insurance will cover the highest rate on those tests.

And, I have two appointments for EMG, nerve conduction tests, at Dr. C’s office already scheduled. One day to do my arms, and another day to do my legs.
Plus, she’s having me wean off the amitriptyline, and start the prozac.

I’m both excited and terrified about the tests. Excited, of course because I have a Dr. giving me her full attention and actually ordering tests to try to figure out what is going on; all of you spoonies know how relieving that is. But the spinal tap and EMG have me a bit nervous.

Any one have tips for getting through these pokey-needle tests? Or just dealing with medical anxiety? I’d love to hear them.

Holding off on the Prozac… and getting an Endocrinologist

I talked to Dr. B2 today over the university’s health care messaging system. She thought it would be best if I didn’t start the Prozac, and that the neurologist (Dr. C) would be the best person to recommend an anti-depressant given all of my other conditions/symptoms. She also said that because I was on such a low dose of Zoloft, that she doesn’t think I’ll go through withdrawal.

I trust Dr. B2, so I’m going to follow her advice and hold off. The September 14th neuro appointment can’t get here soon enough!

In other news, I had a follow up DEXA scan on Tuesday, and it showed a 0.5% decrease in lumbar spine density since last year and a 1.8% decrease right hip, 1.4 % decrease left hip.  All are still in osteopenia range; lumbar spine is 89% age matched group and hips are 80%. Since I have osteopenia so young, Dr. B2 thinks I need to see an endocrinologist. So I’m adding more doctors to my already expansive collection.

No More Zoloft

I think I had an allergic reaction to it.

Last night about 15 minutes after taking it I thought I had heartburn in my lower throat so took some Tums and drank some water. But my throat was tight, and it felt like there was a lump in my throat, and there was no actual burning. Plus, I’d only had a BLT for dinner, which isn’t really a big heartburn food.

So I kept hoping it would ease up with the Tums, and instead it kept getting worse. To the point I was having a hard time breathing.

At 10:57 pm I finally decided it was time to use my inhaler. 2 puffs. And it helped, but not completely.

By this point I was think it was probably not heartburn and more likely an allergic reaction. I didn’t want to go to the ER, since I was having an easier time breathing, so I took 2 Benadryl,and went to bed.

Before going to sleep, I remembered that something similar had happened before, in the past week or so, but not as bad. That time, I wrote it off as heartburn and went to bed too.But there never really was any burning and it was the same lump in throat feeling.

This morning I called Dr. B’s office, (since she’s the one who prescribed it) and talked to her nurse. I’m to stop taking the Zoloft. I guess I’ll add that to my allergy list. And she’s going to call in a script of 10mg Prozac, daily, to Kroger to switch to.

But of course her office called me back AT 5, and I was just about to go to the bathroom, and my brain is all slow and doesn’t work right… so I realized AFTER the call that I don’t know if I should add the Prozac in before the Neurology appointment. I really want to stop adding variables… BUT I also don’t want to have bad Zoloft withdrawal if I don’t add in another antidepressant.

So now I’m torn on if I’m going to call her office back tomorrow and say I’ll to take the Prozac until after I see the neurologist, or if I’m just going to pick it up tomorrow and take it …because I really cant handle my depression coming back like it was and withdrawal and classes right now. And the Zoloft was helping my depression.

Zoloft

Met with Dr. B this morning. I didn’t give her the list of I keep of what’s been going on since my last doctors appointment; she hardly ever addresses my concerns anyway. I even mentioned I had a neurologist appointment in September, and she didn’t ask why or who was sending me there.

She did conclude that I have depression (which, we’d discussed before), and apparently an anxiety disorder (I’m unconvinced).

We were discussing the efficacy of amitriptilyne in treating my migraines. Which it isn’t anymore. And she wanted to change the drug, rather than the dose. She mentioned the other options were blood pressure medication, or topamax- but topamax can make you foggy. I told her that cognitive issues were currently my biggest complaint and I couldn’t handle being foggy anymore than I already am.

She concluded that I am too anxious to concentrate, because I’m already focusing on the next thing to worry about. …I’m not.

I think my level of anxiety is appropriate for what is going on in my life.

But, I do agree that my depression needs to be treated. It has gotten really bad lately. And while I think the depression is a result of my inability to concentrate or think clearly and get done what I need to, I think the depression feeds my cognitive issues. Hopefully treating it will help.

I’m also out of letrozole and norethindrone on Thursday, so we’ll see if coming out of chemical menopause helps my cognition any.

We did opt not to change my amitriptyline until after I see Dr. C, the neurologist. Since I was only ever given the ocular migraine diagnosis by opthomologists who couldn’t see any other retinal problems, I’m looking forward to getting a neurologist’s opinion.

Waiting.

I was going to write a post about my worsening depression. How being unable to feel productive and capable of doing the things I need to be able to do, and once could do so easily, was driving me into a deeper pit of melancholy and despair. But I didn’t. Because the depression robs me of my ability to get things done just as much as my other ailments.

And then I had a [mildly] productive week. I called Dr. S’ office to check on the neurology referral… which I am still waiting on. They were apparently playing fax-tag with my medical records when I called early last week, and I haven’t heard anything since.

I even worked on submitting an abstract and summary for a poster at an academic conference, with a co-worker. I hadn’t felt that academically capable in a long time. Unfortunately, it didn’t last, and as soon as I tried to read the literature for my own scholarly interests again, my brain went back to sluggish understanding and struggling to make critical connections. I did manage to get three chapters read last week. That’s nothing really; I should be reading more at least 5 or 6 chapters or articles a day, and doing a lot of writing. But I’m trying to stay positive, and take some joy and accomplishment from what I am currently capable of doing.

And I crocheted up a couple of drink cozies as part of an ongoing project I’m working on. They’re for a fundraiser the greyhound adoption group I volunteer with has been invited to participate in, in October. I’m getting a head-start now, before classes start again. I’m making drink cozies, some clutches, and a houndstooth scarf. I’m hoping they will go over well and bring in some nice donations.

Unfortunately, over the past few days I’ve also had a worsening of, what I assume is, gallbladder symptoms. Mainly right sided pain- under my ribs, but some upper left sided pain too. And an increasing feeling of heart burn… but not really heart burn. Plus some right shoulder pain. It’s not just after I eat though. Its starting to be pretty prevalent throughout the entire day.

I’m also having more pelvic pain. That lower right side pain that never went away after surgery is still there. It isn’t nearly as bad as it was before, but it likes to pop in and remind me it’s still there.

I’m exhausted, and I don’t know what to do next. Do I try to go back and see Dr. S and have the gallbladder out? Can I even afford to do that this summer? Will I ever get an appointment with the neurologist? Will it even tell me something? Will I be able to make it through the next semester? Through my PhD program in a timely manner? What do I do if I can’t?

I don’t have the answer to any of these questions. I feel like I’m stuck in a holding-pattern when I desperately want to make some progress and move forwards. But I’m just waiting. waiting. waiting.

What now?

I called Dr. S’office today. Apparently the hospital had my bloodwork in their system, but it never transferred over to Dr.S’ office system. The looked up the results and apparently everything looks “really good.” Since the ultrasound came back with absolutely zero indication of anything wrong with my gallbladder, Dr.S recommends that I hold of on the surgery.

So the gallbladder is hanging around for a while.

But that means we still have absolutely no idea of what is causing my problems. According to the nurse I talked to today, Dr. S thinks I should try the low FODMAP diet… which I’m guessing she forgot we already did. And it didn’t make a difference. So I guess Dr. S is out of ideas. I didn’t even get a new appointment. Tests came back negative, and I guess were at her limit. Which is a shitty feeling. I don’t know what to advocate for here…

But, in brighter news, we did get the neurologist referral all worked out. It was incredibly complicated, requiring an administrative referral from my student health center on top of a referral from Dr. S’ office. I’m going to swing by Dr. S office this afternoon and see if they will call a neurologist and do the official “referring” instead of me calling some neurologist’s office and saying Dr. S wants to refer me, and I have an administrative referral from the health center. I’ve had bad luck getting into neurologists before- and by that I mean, I wasn’t able to see one when my chronic migraines started even though I thought I should, wanted to, and had someone refer me (though he was a chiropractor and a family friend, but the insurance covered the MRI he ordered just fine. I don’t know why the neurologist wouldn’t see me). I’m hoping having Dr. S’ office set up the appointment helps things along this time.

And hopefully we’ll get an appointment in before the end of the month. Because on July 31st, I have to get all my referrals renewed or my insurance bumps them all down to the lowest payment tier and will only cover 65%. Which is no good.

…This whole thing is exhausting.