Learning to Live with Stiff Person Syndrome

Posted By MissyFoy

Thursday, January 15, 2015

So, that is what this thing is called:  Stiff Person Syndrome.  Weird name for a weird disease.  I don’t want to have this.  I want it to go away and never come back. It scares me.  I scares my husband.  It scares the rest of my family.  I was running (and winning) fifty mile trail races less than a year and a half ago, and today was the first day in several weeks that I plodded through some “jogging” like steps, and only the third time in months that I’ve tried that at all.  I have gone from fairly functional (at least able to walk around and look normal) to having to use crutches to get to the bathroom in less than 24 hours on several occasions.   Along with all of that, I am taking major narcotics, benzodiazipines, anti-seizure medicines, and a host of immune suppressing drugs just to function at all.

It has been hard.  I don’t really know how else to say it. You see, I think that I have come to realize that physical fitness is my vanity item just like good hair, or flawless skin, or big boobs, or whatever like that is to someone else.  And, I have had it taken away from me for right now.  And, that has been very hard.  I don’t want other runners to “see” me like this.  I went through a period where I didn’t want anyone to know that anything was wrong at all, so I feigned injury and said that was why I had to jog along slowly.  That started in August of 2013.  My physicians, after looking back through my medical records and taking my medical history and all that other crap, think that I have been developing this since at least 2009.  I have an episodic nature to my disease.  I think that made it harder to diagnose, but it allowed me to continue racing and running at a high level for a lot longer so I am thankful for that.

The other night, Saturday night to be exact, I think I ate some bad fish and that cascaded into a terrible episode that ended with an Emergency Room visit and an episode in the car on the way to the ER where I was certain that I was dying.

I awoke about 1:00am Sat night/Sun morning, felt fine, went to pee, bg 98, ate two bites of a Clif bar just to be sure, and went back to sleep to await my4:00am alarm to take my “pre-meds” for the day (if I take this concoction of meds at 4:00am and then go back to sleep until it is time to get up, I awake feeling fairly normal).  But, I awoke at 3:45 am and realized that something was wrong; I didn’t feel right.   I checked my blood sugar and it was 40, so I ate two glucose tablets and tried to decide if I should take my pre-meds then and go back to sleep.  But, I felt weird all over.  Everything hurt and my abdominal muscles kept trying to do that “I just woke up and need to stretch out” kind of stretch.

I woke Bob up and told him something was wrong.  After he got past the confusion of being awakened out of a sound sleep, he turned on the light and came over to my side of the bed.  My muscle spasms worsened at about that time, mostly in my abdomen, but some in my quads, glutes, lower back, and hamstrings – but mostly quads.  So, he helped me check my blood sugar again – down to 32.  Okay, two more glucose tablets … and, less than a minute later Bob had to run for the bathroom trash can so I could puke up all the fish I ate the night before … and the glucose tablets that were going to help with my low blood sugar.  We tried again …. same result.  Then we decided to try to take my 4am meds because the muscle spasms were getting bad enough that the pain was rising quickly.  Puked those up, too. Great. We could try glucagon, right? I have it in the drawer of the nightstand.  But, I had done a four hour workout on the elliptical the afternoon before, been puking everything up, and probably had zero glycogen stores … anywhere in my body.  The glucagon was probably not going to help and would also increase the puking.

We finally decided to leave for the ER.  I needed an IV with dextrose in it.  Nothing else was going to work.  By the time we were driving to the ER, I had been going for about two hours at least with my blood sugars between about 30 and 50 and I started to develop the low blood sugar headache that I have only heard about.  So, it is this frontal lobe headache that makes your head feel like it is literally about to split open.  It makes you certain that if you do not have some kind of aneurysm, stroke, clot, bleed, or something, that you have a brain tumor that just ruptured a vessel or something terrible like that.  I don’t usually get headaches, but I can tell you that this was a straight morphine headache – it hurt that bad.

I couldn’t talk, I couldn’t see really, all I could do was lay back in the seat and roll back and forth a little bit and make unintelligible sounds.  And, then I opened my eyes and looked through the front windshield; I noticed that it was getting light out and I could tell about where the sun was going to come up over the tree line.  I suddenly got this very, very, very vivid image of a field of sunflowers that a farmer had planted a few years back in a fallow field about four miles (running) from my home.  And, if I left the house at the right time with a flashlight, I would be running up about a one mile long hill beside the field of sunflowers just as the sun came up over them.  I ran that run almost every single morning that summer.  So, I had this very vivid image of that field, couldn’t really see anything else except the bright spots in front of my eyes, and Bob sounded so very far away in the distance. And, then, I thought, “I’m dying.” I thought that was it, the vivid beautiful image, everything falling off into the distance, mu body felt like it was completely spent; I was certain that I was dying. I tired to say something to Bob and he said he couldn’t understand me.

I think I may have drifted out of consciousness for a minute or so there and woke back up when Bob made a sharp turn that slammed me into the car door.  The rest of the trip to the ER was a blur, but I do remember the radar detector going off and thinking that we must be passing the fire station at that point.

I did not know that one person could vomit that much over and over and over again.  And, finally, of course, the dry heaves started.  But, the food poisoning and low blood sugar combo problem was only part of the equation.  It began an auto-immune reaction in my abdomen.  At the ER, they gave me some IV Zofran for the nausea.  That is flat-out a miracle drug.  As soon as I could get something down and not throw it up, I took my SPS meds – I guess, in retrospect, I should have asked for them IV but I wasn’t thinking straight, neither was Bob, and SPS is rare enough that the ER doc wouldn’t have though of it.  And, of all the things that I was first able to get down and keep down:  black coffee.  Thank you Bob!!!  After they got two bags of fluid in me, and I was able to drink a soda, eat some nutter-butter cookies, and not throw up, they finally let me leave.

And, all of this had happened on the heels of the Lantus fiasco of Friday night (see previous post).

And, of course, I have a whole heap of students, each thinking that I am their professor alone and that no other students exist -oh come on, we all felt that way in college, admit it.  I never tell my students when I am sick or give any reasons when something is backed up or late, except to say that there were some unexpected administrative things that threw me off track and I apologize.  They have their own life problems and do not need or want to hear about mine.  And, I don’t think that it’s fair to do that to students.

I am feeling a lot better today … finally.  I am hoping that the trend continues.  I plan to stick with my doctor’s medications regimen from now on.  I’ll try not to think about the logic of medications and dosages and my size and my level of symptoms and ….  I’ll just take the meds and keep on keeping on until my next appointment … or until the next time the clinic’s nurse or fellow calls to see if I’m following instructions.

I don’t know why my auto-immune “stuff” progressed beyond just simply Type 1 diabetes.  I worry that something else will be next, something after this SPS, and I wonder what that will be.  Honestly, at times it makes me worry that I am dying.  It makes me worry that some horrible process has started that is irreversible and that my immune system is just going to kill me from the inside out no matter what we do.  Intellectually, I realize that is highly unlikely, but there it lurks in the recesses of my mind.  When I was only months earlier a world ranked fifty-miler and then I can’t get to the bathroom without crutches in the middle of the night and have to take high potency narcotics among other meds just to function, and someone has to drive me everywhere because of all my meds … it lurks there, whether I want it to or not.

So, as I have been writing this blog post, I am eating Cheetos.  At least, they are the organic ones from Trader Joe’s, but I better stop and check to see how badly they have damaged my blood sugar.  I justified it by telling myself that it was something on my bucket list … in case I’m dying or something, you know.  Of course, Cheetos have to be on a bucket list.

 

Happy Trails!

Missy Foy

Jan 15th, 2015

4 Comments to 'Learning to Live with Stiff Person Syndrome'

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  1. Deloris Faheem said,

    Hello Missy. I suffered for years misdiagnosed because I qas morbidly obese. After about my 17th fall I had it. I started going to urgent care every time I fell or had an episode. Then a PA noticed he saw be twice for a fall and that I was really bruised up for falling just after a short time. He took the time to ask how and continued to compare my right side coordination to my left and discovered a significant difference. He said see a neurologist now. So he gave me a week off work and I went back 10 years to every doctor, lab, or wxray place I had been and paid for my records. I made a spread sheet by year with my chief complaints and cried for hours. I had diagnosis that no one ever discussed with me. I had lab results out of the normal range that I was never told. I had letters saying my mammograms were normal yet letters saying I had small growths which thank God I caught myself and had removed. I was dismissed as lazy because I was FAT. Now on meds. and IVig I am somewhat better but I am weakened, 112 pounds lighter, have trouble swallowing, speech problems, left side droop, rigidity, spasms, and now nausea and vomiting with falling asleep during and choking. A few times I felt great and decided to take less meds. Bad mistake. I was feeling better because I was following doctors orders and i learned my lesson. How can i help you get the word out and help others esp. our doctors that don’t really know?

  2. MissyFoy said,

    I’m sorry to hear that you had to go through so much to get an accurate diagnosis and some treatment. I realize how lucky I am to have a very good medical care team that work well together. Still, it looks from a review of my medical records and labs and all that stuff, that I have probably had this developing since about early 2009, maybe even earlier than that. I’m frustrated, too, though. It’s so hard to think that everything is going to feel okay and normal when you get up in the morning and two steps and you already know. I hope that the IVIg helps some with the levels of auto-antibodies in my blood.

    Oh, and I cannot tell you how many times I have tried to convince myself that I could/should change my medication schedule on my own … just because it seems to make sense to me a certain different way. I got myself in real trouble that way by trying to taper myself off of the prednisone on my own. It seemed like a good idea to me at the time!

    I am also lucky to have a more mild presentation of SPS – partly, I’m sure, because of my overall fitness level, but also because of getting appropriate treatments so early (even if they were accidental and nobody knew they were “treating” it at first). I hope those two things continue to carry me through with a better prognosis.

    I have read quite a bit in medical journal articles on auto-immune issues and it seems that most researchers/physicians who work in auto-immune disease areas agree that SPS and similar syndromes are way, way, way under-diagnosed. Even so, though, there is little to no agreement on what that really means for patients. So, do you start really aggressive treatments early on? Does it mean that you just treat symptoms and document and move on? What does it really mean? One thing, though, that I think is very important is that it would help get patients to specialists more quickly and that can mean an improvement in quality of life. I am hoping that I will end up avoiding some of the really bad problems … plus, just knowing is so important because I know what’s going on and I know some things I can do to try to get things back on track; I know when it’s time to call in and see if it’s time to head to the ER or something like that. For instance, yesterday, I was thinking, oh shit am I going to end up in the ER tonight? But, didn’t because my dr. was able to tell me what to do since he knows the patterns of my flare-ups well enough now and knows what meds I respond to better, etc.

    I wonder, too, about the whole “getting the word out” thing, but auto-immune disease is rare enough as it is and this particular syndrome is even more rare … the blood work for testing for it (not to mention all the MRIs, X-rays, bone scans, etc. for ruling other stuff out), is so expensive (my labs for diagnosis would have been over 9,200 US$ if I had not health insurance to cover it). and, I had already had MRIs, CT scans, X-rays, other tests, etc. etc. etc. by then. It has been incredibly expensive.

    I guess one thing would be to try to get health care professionals in auto-immune areas to test for anti-GAD auto-antibodies if there is more than one thing going on, just right off the bat. I don’t know. I don’t have any good answers.

    I hope that you are doing better and continue to improve. I wish you well!

    Missy

  3. Marian said,

    Hallo Missy, its 04:06am in South Africa!! I’ve been diagnosed by a doctor from SA who went to work in England for a few years and our paths crossed accidentally. I was in bed for more than a year as stiff as n pole. Couldn’t move!!! Here the neurologists look at you with very big eyes if I tell them what is wrong. At this stage at the age of 44 I had so many bad falls that fear totally got the better of me I’m clinging to everything and everyone not to fall. I don’t go out and uses a wheelchair if I do need to go out of the house!! It’s quite hard to give me meds because nothing works for me. At the moment I’ve got so much pain that I can’t sleep. I’m with my parents with my 11 year old daughter because I can’t get her too and from school without their help. My husband is a business man and we stay 30km drive from her school and there is no one at home to help me too and from the car. He took her to school in the mornings and I had to fetch her but I can’t walk anymore!!!! It’s been 23 years now. I know it will never stop just nice to talk to someone who knows what I’m talking about.
    Regards
    Marian

  4. MissyFoy said,

    Hi Marian!

    I am happy to “meet” people going through this, too, but it also makes me so sad because I know what you’re going through … and I would not wish this on anyone. I hope that you can get a chance to try IVIG infusions. They tried putting me on a medication called CellCept (generic is mycophenolate mofetil) along with a high dose of prednisone first. The idea was to get my immune system to settle down. I ended up having a terrible reaction to the CellCept and developed bone marrow edema in my pelvis and ended up with four stress fractures. It has taken a year to recover from that. A lot of people do fine with CellCept, though, so I’m not suggesting that it’s a bad medicine for everyone. I am still on some prednisone, some meds to add GABA back into my system, and the IVIG infusions (it’s basically putting new immune system cells and plasma into my body so that my body does not make the horrifically aggressive T and B cells that attack everything – it “tricks” my body I guess). It isn’t a cure; it’s not perfect; it’s expensive so it takes a lot to get insurance to cover it. But, I think it’s helping. I can get up and go to the bathroom in the middle of the night without crutches or a walker usually now, so I’d say that’s pretty good. I totally understand what you’re talking about with the fear of falling. Every time I stand up, I hesitate because I am always afraid that each movement will cause some kind of spasm. And, it changes from time to time. Right now, it is more my abdomen and my quads. I can’t let anything touch my stomach. And, I hate feeling twitchy ALL the time! I hope you find someone who is able to get you on a treatment program that gives you some improvement. Please stay in touch! Missy

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