I have written before of the long struggle that took place in getting my narcolepsy diagnosed, and more recently that there is something new going on which has necessitated more rounds of consults. About 3 and a half years ago I had a period of a few months in which I started to lose all stamina, had numbness in my hands and feet, and experienced severe continual weakness that did not fit the criteria of the intermittent weakness that comes with cataplexy. I also experienced a couple of frightening episodes with my breathing, and some GI issues. One day in December of 09 I was just standing by my dining room table, and leaned over slightly to pick something up, and my legs gave out under me like instant paralysis, and when I hit the floor my back went into a spasm so severe that it took my husband and both our boys to get me up and to my bedroom. This was not my normal cataplexy, which is always gradual and with warning. But it was not the first time I experienced such a “blip”. Other times I had regained control just at the last moment, narrowly avoiding a collapse.
I had neuro consults, MRI of the brain and spine, and EMG’s and lots of lab work. I did not feel very comfortable about the Neurologist, so I made an appointment with the Neurosurgeon who had treated a bulging disk a few years prior. He determined that I had a ruptured disk with serious cord compression. I think we all figured that accounted for most if not all of my symptoms. (Although now, in light of the return of those symptoms, I am thinking otherwise, and think the disk was ruptured in the unexplained fall). I had surgery to fuse that disk, and was laid up several weeks, then had 12 weeks of Physical Therapy. After that I was so improved, that during the year of 2010 I even was able to work for 3 months. But after 3 months, I began to experience severe spasms in the muscles which had been cut during my spinal surgery, and with my Chronic Fatigue/Fibro/Narcolepsy and Cataplexy it is always a challenge to gauge how much I can do, and for how long. Long and short of it, with all my other issues, and having taken on more, including some ministry duties at church along with the hospital job, throw in a death in the family and a rough patch in a dear friendship, and by February of 2011 I was in pretty bad shape. So when I felt pretty lousy throughout spring and into summer of 2011, I didn’t think too much of it, just chalked it up to the normal fallout and relapse that comes with stressful periods. However when by the fall I had not begun to come out of the nosedive, and was starting to experience that severe overall weakness and numbness, I began to be quite concerned. Still, with the Holidays ahead, and knowing I would see my sleep doc in December, I was loathe to open another diagnostic can of worms. The Holidays are stressful enough.
When I saw the sleep doc in December, he immediately ordered another Neuro consult with a leading specialist at the local teaching hospital, which took place in early January, and then more testing by the consulting neuro doc in early March. By that time I had begun experiencing recurrent flu-like symptoms, with joint pain, slight nausea, and rapid drops in blood sugar. None of the Neurologists’ tests, nor my primary docs additional tests gave us any answers and the neuro doc essentially washed his hands of me, telling me to go back to the sleep doc. After so many years of mysterious flares of bizarre symptoms, and after months of being very sick, I was finally just emotionally and physically exhausted from it all and had just about decided to just give up on any further effort at getting to the bottom of things. But I really would prefer to stick around and help my husband finish raising our boys.
There has been much prayer within the family over all this, and many people praying for me. When it felt like even the staff at my primary doc’s office seemed not to grasp the seriousness of what was happening, (the FNP said “I don’t know anything else to test you for. I thought you were going back to your sleep doctor”) I pointed out that my sleep doc was the one who, feeling my sleep issues were adequately addressed (and I agree that they are), had sent me out for the consult to begin with. And I said “something is wrong with me. I can barely walk a block, I can’t hold my body upright sometimes, I have lost 25 pounds in 3 months without trying and I am having joint and bone pain and recurring nausea”.
At that point I am guessing maybe my doctor himself must have walked through and gotten in on the conversation because where one minute I was being dismissed, the next I was given a referral to the top Rheumatologist in the state. When the office lab nurse called me the next day, she had an entirely different manner with me than the other staff had. She was very compassionate and concerned, and told me that my Rheumatology appointment was in July, but to be sure and come back to my primary doc if I need to before then. That whole turnabout was the first God-sent small mercy.
While I have continued to grow even weaker through-out March and into April, there was still the matter of getting in touch with the sleep specialist office to bring them up to speed on everything. My beloved doctor there had left the practice shortly after my last appointment, and I was dreading starting over with another doc. That was when God sent the second mercy in the person of a front-office person named Carol. When I called, you would have thought someone had totally filled her in already on my last 5 months.
I started out by saying that I was a patient of the physician who had left and that I needed to go ahead and get established with one of the other docs in the practice, but that there were some new and disconcerting things that had been going on. I described some of the issues and by then she already had my chart open in front of her, and immediately she began to encourage me. She said “you are doing all the right things. You are seeing the best doctors, and a rheumatologist will test for all sorts of things that other doctors can’t or won’t look at, even environmental toxins and obscure things. You are doing the right thing by staying on top of this from your end, and keeping all your doctors informed, and showing them that you are taking this all very seriously”. I was so grateful for the confidence she expressed in my self-advocacy, and for the encouragement, that I almost cried.
I did see my primary doc yet again today, and more blood work was done. One area not explored (lost in the shuffle of so much else going on) was the fact that I seem to be also having reactive hypoglycemia from time to time, so he is looking into that too. As far as the overall decline, he is of the opinion that since many connective tissue tests are often falsely negative, it’s still likely this is a connective-tissue disorder, and that if we can just treat symptomatically until that consult (and pray for a cancellation that might move my appointment up) then he believes the particular doc he is sending me to, has the best chance of anyone getting to the bottom of this.
Apparently things like R.A. and Lupus often will show improvement on prednisone, so he prescribed a course of that and stated that if I feel markedly better in the next couple of days while on it, then it will go a long way in helping convince the Rheumatologist we’re barking up the right tree, so to speak. I don’t know if that will result in my consult being expedited, but it would at least help me feel like we are closing in on the culprit.
Prayers are appreciated! Pray for an earlier consult to open up, and for definitive answers, and that the Lord be glorified in it all, no matter what the final outcome is.