On trying to keep on keeping on

I have something going on neurologically that I don’t entirely understand. I will be discussing it with my doctor tomorrow at my physical. I would appreciate your prayers. I have experienced many strange things and the concerns I have now, most of them have happened before at one time or another, but now there is no question that something is affecting my central nervous system. I changed my primary doctor about 15 months ago because my then-current doctor just wasn’t doing me any good after 20+ years. He seemed not to have time to listen and got short with me if I brought up more than one concern when I came in.  I think he just has too many patients, and is set on not being in practice with any other doctor. He is so nice, he can’t say no to anyone as far as new patients, especially family members of existing patients.  But I can’t let his problem be my problem.

Because so many different unusual things have been happening in my body for so long, I have  had a handful of doctors (specialists I was referred to) treat my concerns dismissively. Since these clusters of symptoms seem to come and go, it is often resolved or diminished by the time I see whatever specialist my primary doctor sent me to. First they thought it might be something like Lupus. Enough slight abnormalities in my tests and labs were present, that they  thought it might be something just now starting to develop and worth monitoring for a while. So I had Rheumatology visits every six months for a few years. I was left confused as to why I was still needing to see the rheumatologist when there was not anything new going on, no new labs indicating a problem, nothing other than widespread osteoarthritis, which I already knew I had.  Eventually the doctor and the Nurse Practitioner left that practice, so I just quit going. I continued to have some of the same experiences, numbness, strange sensations like stabbing pain, tingling that feels like when you come in from the snow and your hands start to thaw out.  I don’t want to enumerate all the various things that have given me concern, but after a while I had just resigned myself to maybe just having a weird body to go with my strange mind.

My sleep specialist has some new concerns that are completely apart from my obstructive sleep apnea, I had begun having central apnea. The difference is that obstructive apnea happens when the muscles relax in sleep, and jaw goes slack, throat tissue can collapse the airway and cause you to not breathe normally.  Central sleep apnea is more serious and in my case, it .also puts some of my other health issues into a different light.  Central apnea is when the brain or the spinal column has some kind of damage and signals are not reaching the diaphragm, lungs, and abdominal muscles to tell them to do what they are supposed to do. Most of the time it is a short bit of time, then the autonomic nervous system figures it out and signals get where they need to and breathing starts up again, multiple times through the night, and that makes for sleep that is not restful or restorative. If someone who has the obstructive kind of apnea, gets to a point he is needing high pressures, those high pressures can induce the central kind of apnea, however, if the central events go away with a lowering back down of the pressures, the central apnea resolves on it’s own. Mine did not. So that meant  pressures were not the cause, and now we need to find out what IS the cause. I eventually came to realize that my doctors before, that ended up shutting down the practice, had not been really doing the job. They had been negligent, and that is why it seemed like all of the sudden this new group was finding new concerns. Looking back to the last few visits with the old practice, I saw the pattern of decline of care and professionalism. Who knows what might have happened if the new group had not been doing the job the right way. Central apnea is quite a bit more serious that Obstructive sleep apnea. Obstructive sleep apnea can kill you, but usually that only happens over time and only if left untreated. Obviously a person can easily die from Central Apnea if the system doesn’t kick back in and there is no breath for an extended amount of time. Both kinds contribute to cardiac disease, and increase the risk of many other conditions.

What finally convinced me tor certain that my new sleep doctors were trustworthy, was that I experienced that central apnea in a way that was pretty scary. I also have narcolepsy, which requires that I take a pretty potent medication at night, and it can be incapacitating for a certain amount of the time it is on board. My husband shook me and shouted to wake me up one night, and when it finally got through the fog and I was semi-conscious he told me I was flailing in my sleep, like I was fighting someone. This all happened in a much shorter time than it will take me to tell it, but as I begin to register wakefulness, I ripped my cpap mask off and immediately took a huge gulp of air like someone who just got pulled at the last minute out of a lake they almost drowned in. And another gulp, and another one, and it went on for an hour. I wasn’t breathing that way on purpose, that is just how hypoxic I was when he finally woke me up, and I couldn’t control the breathing to regulate it to a more normal breathing. The flailing, I later realized, is something I do out of a momentary claustrophobia-like panic I sometimes experience in my sleep when the mask is on and the high pressure air is whooshing down my airway at the same time I need to swallow. It lasts a few seconds, and the flailing is a response to that panicky feeling that I get because it feels like suffocation. I also had that surgery several years back to take out my tonsils and part of the palate, and other airway impediments in my nose, that was supposed to help with the obstructive apnea but didn’t. So my airway is more open back there than normal, and it’s not just a matter of moving my tongue when saliva or post nasal drip needs to be stopped from going down my windpipe. That adds to that panicky feeling because my swallow reflex fights my breathing reflex. I’d be alright if I could just make all my parts cooperate with each other!

Anyway, that gulping of air went on for nearly an hour, before I guess my oxygen saturations had finally stabilized. I ordered a pulse-oxymeter the next day. If it ever happens that bad again, I want to know what my oxygen level is. If the BiPap that started on March 8th is not going to be able to control the central apnea episodes, I will have to go to yet another measure that is not a full blown respirator, but works in a similar way, by monitoring my breathing patterns and using an algorithm, it makes adjustments to the pressures in real time on a continuous basis through the night. I don’t know what can be done beyond that, other than a gadget similar to a pacemaker that stimulates the muscles by electrical impulse. Surgery is involved in that.

Sudden loss of leg strength, difficulties with balance, dizziness, and a ratchetted gait, internal vibration-sensations, bad tinnitus,  digestion issues, all CNS-related symptoms. I always try not to think the worst. It doesn’t help anything, but this is kinda scary stuff, and the fact that certain clusters of symptoms come and go, put this former nurse in a position where I know what type of conditions CAN cause that sort of thing, and none of those are good. Since I already had some evaluation and testing of the inflammatory autoimmune stuff, I went first to my new rheumatologist to have those labs repeated, so I could maybe rule out further evaluation in that direction. All those were completely normal. Sed Rate, EBV, ANA titers all the things that point toward an inflammatory state in progress.

These are all conditions that often go undiagnosed for years because they can manifest such a wide range of symptoms from one patient to the next, and several conditions have features in common. You usually have some other thing diagnosed first (such as narcolepsy or IBS or Crohns) which later on you learn was actually caused by some over-arching condition like Lupus, MS, or it could be a tumor on the brain or spinal column.  A person can have a condition and it not show on labs, and you can also get positives on some labs and it still not establish the diagnosis, or even which condition you are dealing with.

I spoke quite a bit about that stuff early on when I first started the blog, but that was a decade ago and many current readers may not know that history. I don’t know about everybody, but I don’t like to keep talking about that stuff for long. It’s good to have some folks who are aware, and that you can vent to knowing you won’t be judged, but there are some people who you will later regret having spoken to about it at all.

I just ask you to pray for me, for the appointment tomorrow, that it will not be rushed, and that I can come away with some reassurances and not more frustrations and unanswered questions.  As I said, I have had doctors be dismissive, even make light of my concerns, and anytime I need to bring something new up with my doctor, or any doctor, and try to provide history related to it, it sort of feels like PTSD. There is a lot of history that needs to be provided, and lots of questions the doctor will probably ask. My memory is not great under the best of circumstances, but stress makes it even worse. My blood pressure shoots up every time I go to the doctor anyway, but that is part of all the CNS stuff too, BP is autonomic. My BP’s swing in wide arcs. Some are really low, some really high, no discernable rhyme or reason or pattern. My Central Nervous System just seems to be haywire. I startle with the slightest sudden move or sound around me. Not fear, just over-active reflex responses. I am having spasms, and when something jerks, the rest of my body jumps in reaction to it. I was plugging in my curling iron, and my husband poked his head around the doorway and spoke, and I jumped out of my skin and screamed. That happens a lot, and being as hard of hearing as I am, doesn’t help, even with hearing aids, I often do not hear anyone approach, especially when I am not expecting it. Then it took thirty minutes for the “fight or flight” reaction to dissipate, and my heart rate to slow down. I have a constant tremor now that started a couple of years ago, and it gets worse when I am flustered like that. It was in just my hands for a while, but now my neck too. It is only when I am moving, not at rest, which I hope essentially rules out Parkinsons? But am not sure.

When the neuro symptoms first happened several years back, I had an MRI and some nerve conduction tests. The Neurologist told me, because I specifically asked, that we weren’t dealing with ALS. ( What Steven Hawking had). It doesn’t pay to do too much  “research” at a time like this. My physical was supposed to have been two weeks ago, and her office staff called me and pushed it back, so there has already been a frustrating, though unavoidable delay in getting to discuss all this with my doctor.

She  wasn’t my doctor back when the other episode happened that lasted about 2 and a half years. It was acute at first, then had waned by the time my actual appointment with the rheumatologist came around, but clusters of those same set of symptoms recurred about once every month, with less severity. As far as I am concerned, whatever I have, I have had as far back as 2011, and possibly as far back as 1996. Narcolepsy itself is autoimmune. I have no explanation for the necrosis and collapse of my left hip’s femoral head, either, which normally doesn’t happen unless there is a trauma to the hip, which I never had. However, my doctor did treat me with oral prednisone, and prednisone injections in the period when I was first having pain there. He didn’t order an Xray. Come to find out, the only thing other than trauma that can lead to a femoral collapse, is use of prednisone and other steroids, so that actually probably made it worse.

I wrote up as brief of a history for my current doc as I could, and described the newest concerns that I am having now, and dropped it off for her today so she will have some idea about what is going on when I come in for my annual physical tomorrow. I am hoping that will make the whole ordeal a little less stressful. My husband is always willing to go with me, but this doc’s exam rooms are tiny, and he has taken a lot of time off the past couple of months for various things, and I got the impression it would be better if he didn’t have to take off again just yet. He has a very calming effect just by being there, when he can go.

I so dread having to address medical history yet again with different doctors. They all treat you in slices now. If you go to a heart doctor, he is only going to consider things that fall within that purview. They don’t look at things like, the hearing loss, and how that effects communication and my ability to give them an accurate history, because I heard wrong, or didn’t hear all of a question. Sleep docs understand how very hard it is to lose weight with sleep disorders, but family docs don’t consider that. I have recently lost a lot of weight, whereas it has been nearly impossible for years.  Few medical professionals I have ever met personally seem to really know anything about narcolepsy, and some never even heard of cataplexy. (Though ironically I do have a rather uninformed  in-law who thinks she knows what narcolepsy is, “because her cousin has it”)  You get that kind of thing. There are disabilities that are obvious and specifically consist of one condition. But there are also a lot of people who have multiple conditions that together drastically effect a person’s functional abilities. I have not spoken here about all of the ones I have.  It hurts being judged, but if I don’t advocate for myself, keep pressing for answers, I can’t get the help I need. We need to figure out what is effecting my central nervous system before more damage is done. God knows the truth, and that’s what matters. But you can see how it’s always risky to open up about any new thing regardless of the context or person you are confiding it to.

I am really looking forward to that new body in heaven! Ready to go home!!!

3 thoughts on “On trying to keep on keeping on

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