Neurology Update, I’m not Sick, Just Crazy

I have been waiting months for this Neurology appointment… and for what?

This neurologist concluded basically that I’m not sick, I’m just depressed.

She denies that ANY of my symptoms are related to the intracranial hypertension and declares it completely under control because I don’t have pressure headaches and my eyes are mostly fine (just slightly elevated pressure there too). Except I didn’t have pressure headaches before the lumbar puncture and didn’t have any significant eye problems at that time either – but my pressure was elevated. That’s an objective, empirical measurement. Normal intracranial pressure is up to 20 cmH2O. My opening pressure was 29 cmH2O.

She tells me it’s not even a very elevated pressure. But it is elevated! It’s above normal! It is unequivocally in the intracranial hypertension range.

She denies that my memory loss, brain fog, confusion, et cetera could be at all related to fluid inside my skull squeezing my brain.

What she thinks is far more likely is that depression is causing me significant memory loss and trouble thinking. These are not symptoms of depression though. Even if depression can have some effect on memory and concentration, but it is not a normal, standard symptom of depression to forget your name, date of birth, address, common words regime you try to speak out right, et cetera. It might impact concentration but it doesn’t have the effect of severe brain fog, confusion, and dizziness. Depression definitely doesn’t cause yuppie legs to give out. It doesn’t cause vomiting and weakness from physical activity. I work in mental health, these are not signs of depression, they are signs of physical illness. And obviously I can’t treat myself but my therapist and psychiatrist both agree that it is ridiculous to claim my symptoms stem from mental health. My mental health evaluations do not in any way indicate this to be the case. Though my depression treatment does indicate that the primary source of my depression is my physical health problems and dealing with doctors.

She suggests I need a good PCP who can put together all the pieces from all the specialists I’ve seen. Which I find an ironic comment as she tries to pass me back to gastroenterology who’ve already claimed “not us” too. No one is working together here. Everyone is just passing me of to someone else to deal with so they don’t have to be bothered.

I ended up crying during the appointment which I hate. But it’s so hard dealing with being this sick everyday and having doctors tell me I’m perfectly healthy, maybe it’s just depression. (Which btw we know many disorders common in women were written off by doctors as psychosomatic for years, decades, before someone realized, “oh hey, this is actually a thing! Who knew… other than all the women who’d been telling us for decades that they are sick and this is real. But those crazy ladies, can’t trust what they say.”

It gets in my head though and doctors make me feel crazy. Maybe this is just in my head. Maybe I’m not really sick. Maybe it’s unrealistic for me to hope and expect to not feel awful all the time, maybe what I need to do is just push through it harder. Maybe everyone actually feels this way and this is totally normal and I’m crazy for seeing something wrong with it.

Then I do some reality testing. Is it normal to feel this way? I know for a fact that until relatively recently I didn’t feel this way all the time, so obviously this isn’t just standard. Do other people collapse and vomit when trying to do anything slightly physical? No, they don’t. When I put these thoughts to the test, logically they don’t hold up.

That doesn’t mean doctors don’t still make me feel crazy and hopeless.

Having doctors deny anything is wrong is, psychologically, so much worse than if they say “something is obviously wrong, but we don’t know what it is”. The latter says, ok, well, let’s work on how to manage living with this then. The first says there is nothing that needs to be managed.

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Odd Symptoms vs Generic

I was never a big fan of the show House, and when fans said how they’d want Dr. House as their doctor I thought that was ridiculous. I never would have wanted him as a doctor, on the show he was ok basically torturing patients if it provided an answer for him.

Now I understand needing to know what’s wrong enough so badly, that I’d choose him if he were a real life option not a fictional character.

But instead I often mentally think of my symptoms as of they were on his white board.

I was thinking about some of the things about my illness that are oddest to me. Most… specific, and peculiar. I don’t know why doctors don’t focus there. They focus on weeding what a describe down to the symptoms that they are most used to- nausea/vomiting, fatigue, falling, dizziness. Each symptom is worked down to its most genetic aspect. And then doctors focus on the symptoms from that which stand out as most typical – “oh, nausea/vomiting. Ok this is a nausea/vomiting issues”, this is what they say and then where they seem to work from in diagnosing.

But aren’t the parts that are strange going to be the most telling? One thing I’ve tried to emphasize so much since this started that I feel like is never really given consideration is how every bit of my symptoms is made worse by standing, worse than standing by walking, worse than walking is anything that increases the intensity of walking- walking while carrying groceries, et cetera.

Physical activity/exersion is a trigger for it all but not all physical activity is the same. I can push myself in my wheelchair longer than I can walk before symptoms come on. I can swim with very little symptoms.

One thing I notice though, is all physical movement is still not equal. The more I involve my legs in swimming the sicker I get. Using just my arms, I’m fine. I font know if its really something specific to my legs or just that by using them I’m involving more and larger muscles in my movement.

Yet this factor which to me like it should help differentiate what I’m experiencing from everything else which can also cause nausea and fatigue. Just looking for what explains something like “nausea and fatigue” seems impossible without specifics and more details. Is there any medical diagnosis that doesn’t include nausea and fatigue in it’s possible symptoms?

PCP Update

I’ve been meaning to post about the appointment I had with my PCP end of February for awhile now, but between a bad cold and my work computer breaking (my personal computer has been broken awhile) I haven’t gotten around to it.

I’m having to write this on my tablet actually, which is slow and tedious.

So after my last neurology appointment it sounded like it was back to square one investigating non-neurological possible conditions (co-occurring, or causing the IH).

Neurology specifically suggested gastroenterology but if we went back to were I was pre-spinal tap with my PCP on exploring options, rheumatology and endocrinology were the most recent referrals.

Rheumatology blew me off based solely on the reasoning that my IH should explain all. Well, Neurology disagrees, so to me that means Rhematology should be reconsidered.

Endocrinology I never followed up with thinking that it was unnecessary after the spinal tap results.

Well, now my PCP doesn’t see any reason for me to see any specialist other than gastroenterology.

And she is uncomfortable with me being on zofran so long without really knowing why, hinting that she is not going to keep giving me refills. With Zofran being one of the biggest things keeping me the tiny bit functional I am.

Overall, this appointment was really demoralizing.

I feel like I hit some time limit for doctors, like there is an indivisible, never explicitly given, time limit doctors give for either figuring out why you are sick or deciding that if it can’t be explained yet, you must not be.

Also when I mentioned (at her prompting) spinal tap results including the red blood cell, white blood cell, and lymphocytes in my csf, she says that is probably normal because if I had encephalopathy I’d be “really sick”.

….

….

I AM REALLY SICK! That’s why I’m here. That’s why this is why I keep coming back about this. This is why I try to keep emphasizing how much this is impacting my ability to life every fucking day. Because I am REALLY SICK.

This appointment along with others recently have me wondering if doctors understand how much they impact people’s lives- not just directly with diagnoses, medications, or surgeries, but with what they say, how they approach sick patients. Doctors have me feeling incredibly hopeless. Completely. Like I have no life and no hope of a life and it’s only to get worse and worse and doctors are just going to make it harder for me, not easier. Mental health is just as much part of health and the impact doctors have on this by how they deal with such illnesses/sick patients is important, IMO.

The thought of going back to gastroenterology stresses me out. I already saw gastroenterology who determined it’s not gastroenterological. So now I have to go back to gastroenterology to tell them neurology thinks they haven’t fully considered all the gastroenterology options. I expect this to result with gastroenterology saying I need to go back to neurology. Leaving me bounced back and forth between two specialists claiming, “not me!”

I work in integrated healthcare and Henry Ford is supposed to be an integrated healthcare system, but I feel like a lot of folks say “integrated” without really practicing it because it would require actual changes in how medicine is practiced. I need an integrated healthcare approach. Not physical-mental health integration or mental health and substance abuse or physical health, mental health, and substance abuse integration, as it is used most often to mean in my work, but first off I need my physical health care to be integrated with itself.

By which I mean, I need doctors to work as a multi-disciplinary team, not separate entities who can just pass the responsibility to someone else whether that person will do anything  or not, because figuring me out is hard.

I need a gastroenterologist to consult with a neurologist about this, not just bounce me back and forth between them.

But that’s not healthcare is practiced, IME.

You Won’t See Me At My Worst

I have so many thoughts and feelings I want to capture in a post right now but they don’t all belong jammed into one blog post, so let’s see how well my sort of out of it mind can do at staying on track tonight.

I mentioned talking with coworkers about my illness. Well, they have followed up a bit on that conversation. One follow up was what do I want them to do if they see me fall at work. I said, if I’m conscious, let me rest and I can get back up in a few minutes. If I’m unconscious- that is not normal, please call me an ambulance.

I also reassured them though that this probably won’t come up at the office. I don’t go to work at all on my worst days. On my so-so days, I’m not even sure how much coworkers would notice. If I’m feeling weak and put off faxing something for a few hours, or I use my cell phone and an app to fax it from my desk so I don’t have to walk across the building to the fax machine- would anyone notice this as a sign of me being sick? Do people notice that I tend to touch the wall when I walk to keep myself from staggering and falling? Would you notice the extra bathroom breaks if I’m throwing up a lot that day? When we talk and there is a pause in my speech, do you realize this is a sign of me being unwell and having trouble  remembering the word I need? Would you notice when I stare intently at a spreadsheet in excel for hours and hardly do anything to it because I keep forgetting what it is, why I’m looking at it, and what I’m supposed to do with it?

There are signs at work of my illness. But they aren’t big flashy “THIS PERSON IS SICK!” signs. They are the kind of things I suspect most people are too wrapped up in their own lives to notice, or if they do then they just write it off as a quirk of mine.

There is something extra hard about an illness being invisible in this way though. And of course  benefits to it as well. But the difficulty is getting people to realize it’s real and hard. Even for family, who I don’t believe ever doubted me or didn’t believe my severity, I think the first time actually witnessing me fall changed things a bit.

But no one has ever seen me at my worst. Even my mom who has been a great support and been around to help has not seen me at me worst. She didn’t see me lying in my yard crying because I fell mowing the lawn and couldn’t get up, and retching uncontrollably even though I had nothing to throw up. She didn’t see this repeat in the snow in the winter when I shoveled my driveway.

And the worst though is that doctors never see it either. Because I can’t just choose when to be the sickest and make myself be sick for an appointment but then ok before and after. And appointments are low intensity- they don’t trigger the severity of my symptoms. Sitting in a chair at a doctor’s office, I’m not going to fall because I can sit all day without falling. I only fall when walking. So doctors hear me describe being  ill, but they see me looking like a totally fine 30 yr old woman who should probably lose weight though. And so I don’t get treated as very ill by doctors, who I need to be treating me as if I’m very ill, because I actually am very ill!

“Everything was Normal”, Except it Wasn’t

I’m temporarily filling in in a different department at work, one I’ve filled in at before so I know a lot of the folks who work in that department. This department doesn’t have enough office space for staff so there are a number of staff people, myself included again, who have to work out of the main conference room, which is also where people take their lunch.

So during lunch I was talking with some coworkers and someone asked how my PhD is going, I explained I’m on a medical leave of absence and gave a brief overview of my health issues. One of my coworkers has a daughter a few years younger than me who also has some serious health issues. One thing she recently dealt with was a brain infection and so after talking over lunch I looked up the infection and then was checking if it was something I had ever been tested for (the answer to that is no.)

In the process though I was looking back through all my spinal tap CSF lab work- that was done in early September and I was told was all normal.

Except I just realized it wasn’t all normal. I had elevated red blood cells, white blood cells, and lymphocytes in my cerebralspinal fluid.

I’ve had this happen a number of times before where doctors say “everything is normal” when it’s not. Apparently what they really mean by “everything is normal” is “nothing that is abnormal is conclusive of any particularly diagnosis so we are just going to pretend it’s normal” or sometimes I think “it was abnormal but not as abnormal as we expected to see”- as I can only assume was the case with the ophthalmologist who said my eye pressure was “fine”, yet when I looked it up later, was actually high (ocular hypertension). I can only assume she meant that they frequently see much higher pressures among folks with IH and therefore don’t consider mine high enough to be troubling, given my known IH. But that is different than “normal”.

Looking up info on elevated red blood cells, white blood cells, and lymphocytes, most of it seems to be pretty vague- could indicate bleeding, could indicate inflammation, could indicate infection, could indicate a variety of disorders. Basically like all my abnormal test results throughout this- it’s not that they aren’t finding things wrong with me, but nothing points to any conclusive cause for the abnormal results.

One thing I found looking it up though was Susac’s Syndrome. Which is interesting to me and I want to ask my doctors about it because Susac’s impacts inner ear, retina, and brain. And may not have signs of all at the same time. I have diagnosed inner ear disorder and clearly something neurological going on. In fact, from what I read, when it presents primarily as inner ear Susac’s is frequently misdiagnosed as Meniere’s… which I’ve been diagnosed with. May be totally unrelated, but interesting looking up my abnormal results and one thing I find is a rare disease that impacts the same variety of systems I know I have something wrong with.

 

Whooping Cough and a Cold

I’m trying to pay attention daily to my facebook memories so I can keep track of the progression of my illness last year.

I was generally ok around January 21, 2017 because I was in DC for the Women’s March and while I was sore and needed to rest by the end of the day, I didn’t collapse and I wasn’t coughing all day that I recall.

But by February I had a “cold” which I would later discover was most likely whooping cough- one of my supervisors at work had whooping cough, and my coughing stuck around past March, so it lasted a long time.

In hindsight, I wonder what if any role the whooping cough may have had in me getting so sick. Because I never fully got better from the whooping cough before this new issue started up.

 

That was last year. Fast forward to this year and end of February and I have what might be a cold. Apparently it’s too much to ask that I go a year without getting some sort of winter illness.

I’m not sure what is up with me right now, my coughing is currently no worse than it always is (since May 2017), but my throat is sore now and I seem to be losing my voice.

So that’s great.

Henry Ford Survey

I got a survey in my email from Henry Ford neurology asking me to give feedback on my last appointment. I feel like they are probably going to be regretting asking ME for feedback.

The neurologist I saw last was not bad- she was nice, she listened, I don’t think she is a bad doctor.

However, I am deeply unhappy with Henry Ford neurology and overall also unhappy with my treatment from Henry Ford overall.

Overall, I feel like doctors just keep passing me around because no one has answers and no one wants to take the time to really figure out what’s wrong with me and it’s easier to just pass off that responsibility to someone else.

For neurology in general, I’m still mad that I can be as sick as I am and struggle so much just to get an appointment. I am mad that they think it’s ok that I go months on end with no care. I am mad that I was lied to about a waiting list. I am mad that I was given conflicting information on whether this last neuro would even be appropriate to see patients with my condition. I am mad anyone there would think it is ok for a patient to have a spinal tap that has abnormal results pointing to a neurological condition and then not have any neurology follow up for 5 months.

My complaints aren’t with this last doctor specifically. They aren’t with the last appointment specifically. But cumulatively I’m getting more and more pissed at Henry Ford and how my care is being handled by them as time goes on.

Mold Update

I got the report of what was included in the allergy tests and it was actually 4 kinds of mold:

  • Alternaria tenuis
  • Aspergillus fumigatus
  • Hormodendrum cladosporioides
  • Penicillium notatum

Stachybotrys chartarum was, unsurprisingly, not included. These molds seem to be ones most associated with seasonal allergies…. which is not at all what I’ve been experiencing. So, really, what value was the allergy testing even, for me?

No Allergies

Ok, so brief summary- my symptoms started at least in April if not earlier, though I didn’t really realize they were new symptoms and not just the result of me working out too hard until they got much more severe to where they were impacting my ability to walk and do basic chores at home (and work) which was in the beginning of May.

At the end of the summer, after I’d been going to doctors and they were at a total loss, I went to remove my window AC unit in my bedroom that had been on and blowing out air I was breathing in all summer long, when I discovered that it had a black mold all inside it. So it had been blowing mold particles into the air I was breathing.

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Image of mold growing in petri dishes. 

Assuming that cannot possibly be healthy, and having read that toxic black mold can cause similar problems and supposedly there are some blood test indicators of block mold poisoning, I went back to my PCP with questions about this. She said she didn’t know and I should see an allergist about a mold allergy.

Basically from the very beginning “allergy” didn’t sound like what I was experiencing. I was concerned with a toxic mold, not something I had a particularly allergy to.

Because of this I wasn’t super on top of making the appointment with the allergist. I’ve been focusing on getting into neurology. And of course neurology would be so much harder to get into than an allergist. I got an allergist appointment basically right away when I called. I rescheduled once due to snow though, so I finally had the appointment yesterday.

They did some breathing tests since I also have asthma and coughing has accompanied

all my other symptoms. But my breathing, when I’m not experiencing acute symptoms of breathing trouble, is fine. I don’t have non-stop breathing difficulty- it is triggered by physical activity like the vomiting, and muscle weakness, and so on. And my asthma before all this was also always an exercise induced thing- I didn’t get asthma attacks except when working out.

Then they did a “scratch test”, patch testing for various allergens including 3 types of mold (I don’t have the papers they gave me on me to see if they in any way indicate what types of mold that includes). At first I thought, oh, I guess there is something because almost immediately one spot on my back was itching really bad. But nope, that one spot

was straight histamine I guess, that everyone is supposed to react to, that is kind of a control to make sure the test is working at detecting a response at all. No other allergens had any reaction. … But then, what reaction would be expected when rash, itching, et cetera where never part of my symptoms?

So no allergies. Except that still doesn’t really answer my mold question and i feel like breathing in black mold for months is a health concern regardless of allergy to mold.

But what do I know, I’m not a doctor….

This all just leaves me with the feeling I’ve had since the beginning- what are you supposed to do when you are so clearly, so very ill but no doctor has any clue what is wrong with you or what to do about it?

Getting the Ball Rolling Again

Finally got in for a neurology appointment today- with a different doctor. Who specializes in a different subsection of neurology.

But at least it gets the ball back rolling.

Though it also kind of leaves me back at square one in a way.

Basically she says that it’s unclear if or how much of my symptoms are being caused by the intracranial hypertension. She actually suggested frequent vomiting could cause the increased intracranial pressure, though I’m not sure I would buy that. But I’ve pretty much figured out on my own that it’s iffy how much of this can actually be attributed to the intracranial hypertension.

To determine that, she has me increasing acetazolamide from 1000mg/day to 1500mg/day.

I asked about doing another spinal tap to determine if the medicine is working- since my symptoms can’t be used as a measure if they are trying still to determine if that is the cause of my symptoms. She says no, they will just determine that by increasing the dosage of the acetazolamide more and more.

… which just logically makes no sense to me. How are you going to keep treating this blind with no means of knowing if the medication is actually doing what it’s supposed to do? Because if I still have symptoms and my pressure is still high despite the medication (which is very possible and common), that’s different that if I still have symptoms with no relief but my pressure has gone back to normal from the medication. And that’s an important distinction to make when trying to determine if and how much of this is caused by the intracranial hypertension.

But anyways….

She suggests I go see a different gastroenterologist because maybe they didn’t fully consider all the possibilities there. Though gastroenterology doesn’t make much sense to me because gastro disease wouldn’t be likely to cause muscle weakness, tremors, memory less, brain fog, et cetera.

She also suggests in the meantime I take an antacid daily and see if that helps…. because an antacid is definitely going to stop my legs from giving out and fix my memory problems.

But whatever.

She also checked my blood pressure lying down and standing- no change from lying down to standing, though they didn’t check both sides this time so no idea if I still have drastically different blood pressure on my right and left side, like last time. Once again, repeating tests that have been done. In the 10 months this has been going on, other  doctors have considered blood pressure as a cause of dizziness, and ruled it out. Ruled it out again today.

At least this gives me a game plan for going forward though. Wednesday I see an allergist who my PCP says can check for toxic mold exposure/mold allergy. End of February I will go back to see my PCP and see if I still need referrals for gastroenterology, rheumatology, and endocronology. Gastro because neuro recommends it. Rheumatology, because I want to see a different doctor since the last one I saw basically didn’t bother considering any rheumatological disorders because she says the IH explains all my symptoms… well neuro disagrees and they would know better than rheumatology on that. Endocronology… I had a referral for but then never followed up because the spinal tap results seemed to suggest it was neurological.

(and all those specialists will cost me $275 in copays -_-)

So…. it’s kind of back to the drawing board to investigate other possible causes of my symptoms.

And I don’t see my normal neurologist until end of April.

I am so friggin tired of being so sick.