“We conquer not in any brilliant fashion – we conquer by continuing” – author unknown
Current Medication Protocol:
IV saline twice a week (a total of 3 to 4 liters per week); Epogen injection every other week (4,000 units); Valtrex 500 mg twice a day; Klonopin at bedtime .5 mg; Aleve (as needed for headaches); Meclizine (as needed for dizziness), VSL#3 (a potent probiotic) I pkt/day.
(Medication Changes: Since testing began after an inflammatory lesion was found on my cervical spinal cord on an MRI in February of 2013, I have been off IVIG (Gamunex). With all of the testing that followed and the time and energy required to complete them, I discontinued my trips to my local doctor’s office for the IV amino acids (Aminosyn). I was able to continue, and in fact, increase my intake of IV saline through my home health nurse, which I found to be helpful. I switched my epoetin alfa injection from Procrit to Epogen only because the latter is less expensive and this is one drug I must pay out-of-pocket.)
In this blog, I will update you on the travels and investigations that continue on. To summarize my last blog: I saw a neurologist, Dr. G, at the University of San Francisco, to whom I was referred by Dr. P. After completing the long list of scans and other tests ordered by Dr. G, all of which returned “non-definitive,” Dr. P and I decided that I should return to Incline Village to have another lumbar puncture (LP), #3 to be exact, hoping that since I’d been off IVIG for five months, we would have a better chance of finding something.
My last LP was February 2013 while I was on regular IVIG infusions. The theory is that the IVIG could have masked something as the expected inflammatory properties were not seen in my last spinal fluid test.
In Dr. G’s opinion, the very mildly hypermetabolic lymph nodes in my chest area – not at all enlarged and non-specific in nature – are what he wants to go after next, suspecting neurosarcoidosis and suggesting a biopsy of those nodes. Relative to the tests I’ve done so far, this one would be much more invasive. I chose instead to take my chances of finding something in my cerebrospinal fluid (CSF).
My first LP was done at my very first visit to Dr. P in June of 2009. It was a breeze. My second was in February of 2013, the day after the cervical spinal cord lesion was discovered. It too was uneventful. As a result, I have no trepidation in doing a third.
My travel choice is the two day car trip, as flying alone always seems to be so much more taxing. Like always, I commence a search for assistance. Having been blessed by so many helpful angels in the past, this time is no exception. Suellen (spelled like Suellen in Gone With The Wind), a volunteer at my church and a friend who conveniently lives two blocks away, offers to take me. Locked and loaded, off we go on another of the only road trips I ever get to take – to a doctor’s appointment!
Day One/Two (Saturday and Sunday)
The company is great and thus, time flies. Suellen is a gem of a companion, so helpful and empathetic. She gets it! Most everything goes smoothly except for the fact that my neurological symptoms have unknowingly worsened to the point that it has become uncomfortable for me to sit in a car seat that is far from being as soft and cushy as my recliner at home. I find myself shifting my weight often, trying to find a position I can tolerate for a period of time. Things ache, hurt and burn and are perhaps an omen of what is to come. But I manage well enough and we make it safely to Lake Tahoe by Sunday afternoon.
Day Three (Monday)
The LP is scheduled early at 7:00 a.m., even before I visit with Dr. P. Since it must be followed with 48-hours of lying flat, it’s best to get it done ASAP. This also increases the chances of getting lab results back by the end of the week.
Nurse C whisks me off to the exam room where she gently places me in a fetal position on the exam table, prepared for Dr. P’s grand entrance. I know that my most recent health issues have been a challenging mystery to all so as he walks in I remark, “You must be frustrated to see me again.” “Don’t be silly” he says with a smile. “You were invited to come back.”
Dr. P proceeds to inject Lidocaine into the skin area to be punctured. I experience a dull, aching, nauseating pain down my leg. I’ve never had pain during this procedure before, so I am wondering if something may be wrong. I express my discomfort “Ouch!”
He tries again….”Ouch… OUCH!”
As I start to sweat, Nurse C wets a paper towel and applies it to my forehead. Obviously I am looking pale and faint. Dr. P seems surprised as he tells me he is only administering the numbing agent with a small needle into the skin. He hasn’t even started the lumbar puncture! He expresses concern that this must be a result of the disease process – this hypersensitivity. I take some deep breaths in an attempt to relax. Thankfully, the actual needle puncture into the spinal column is not anywhere near as painful as the skin sensations, and soon Nurse C is saying “we’re in.”
Dr. P is perplexed but actually this is consistent with what I’ve been experiencing. Slight brushes against my feet or legs can cause my legs to jump – but if my legs are firmly grabbed, I am not as sensitive. No longer in pain, it is just a matter of now waiting the ten minutes or so for the three tubes to fill with my CSF.
When the procedure is done, I am wheeled into the room that I call the “rest and recovery room.” In the past, I have been able to relax, nap and infuse fluids for the entire day that I am required to remain there. So, thinking the worse is over, I let out a sigh of relief. But this is not the case today. The misnamed “rest and recovery room” becomes Grand Central Station! It is important to receive my IV saline as the fluids help me replenish my CSF, but I am not allowed it until my blood draws are complete. First comes the many vials drawn for Lab Corp – this is usual for every visit.
But this is followed after several minutes by another needle poke in order to draw blood for the Cleveland Clinic and other faraway places. Just when I thought my blood donation was complete, Dr. P’s research coordinator, Gunnar, apologizes for needing to poke me yet again to draw blood for the CDC Study. Nurse J sums it up perfectly when she says “Corinne, look at it this way. Your body fluids are going on vacation all over the country, but you’re staying right here.” J
Now that my IV saline is finally set up, I mistakenly think I can now rest but the staff continue to come in and out with form after form to be signed – papers that will accompany my blood and CSF to the many labs, as well as for insurance. By now it is well past noon and I’m starving.
This time I did not prepare a filling meal to bring along. Instead, I munch on some almonds, yogurt and a banana. The room is cold and because I am infusing room temperature saline, I’m shivering. What I really crave is a steaming bowl of soup. Though I know that I can give Suellen a call if I need anything, I give up on that idea when I decide that I’m actually more exhausted than hungry. I decide to try to rest, but it isn’t long before the saline does its thing – trigger the urgent need to empty my bladder!
Having to remain with my head at or below heart level for at least 48 hours, I go through that always awkward effort to slide off the table and onto my feet. As I use my arms to lift my body into a semi-pushup position, I feel an excruciating pain in my left chest muscle, as if someone stabbed me with a knife. It’s painful enough for the thought to cross my mind…have I dislocated a rib?!
I continue to the nearby bathroom and awkwardly climb back onto the table. The pain is gone but the muscle feels sore. I am wondering if it has something to do with the nerves coming from the spinal cord lesion or if I’ve strained a muscle. Considering all that I’ve been through today, I am feeling akin to a human punching bag – not only tired, cold and hungry, but just plain ol’ beat up!
It is now 2:00 p.m. and I haven’t had a chance to rest at all. It isn’t long before I have to make another awkward trip to the restroom, getting tangled up in my IV tubing during the process. Each effort is difficult and painful. This is by far the toughest time I’ve experienced while having an LP. So far the third time has not been a charm.
I am told not to leave the building until Dr. P sees me. That turns out to be after his last patient, at 5:15 p.m. I’ve been here over ten hours and I’m pooped. Suellen has been waiting in the lobby since 3:00 after spending some of the day exploring Lake Tahoe, but never wanting to be too far should I need her. When Dr. P walks in, he takes a seat and to be honest, he doesn’t look much better than I do. Yawning, he puts his head in his hands, appearing exhausted. How can I not feel empathy for this man’s hard work and dedication?
Dr. P asks how I am feeling and I confess that this time has been tougher than the other two. He tells me where by CSF and blood have been sent (Lipkin for studies, Cleveland and Mayo Clinics, University of Miami, etc.) and remarks that he feels that this time we will find something. He wants to see me again before I return home. Since I have to lie flat another 36 hours and he will be out of the office for a couple of days, our appointment will have to wait until Friday morning.
After asking who I came with, he graciously goes out to the waiting room to introduce himself to Suellen and to thank her for accompanying me on this trip. I am then wheel- chaired out to the car and trying to remain as flat as possible in the passenger seat but in a boatload of pain from the contorted position, I grit my teeth during the 25 minutes back to the hotel, where I plop myself into bed to stay.
Day Four (Tuesday)
I had a rough night. Turning is difficult as that stabbing pain in my left chest has become a very sore muscle, not at all conducive to bearing weight. The soreness reminds me of my pre-illness workout days when I would do too many pushups.
Today I am allowed to use a small pillow but I still have to remain relatively flat, hopefully to prevent the dreaded post-LP headache that can occur. The hotel staff brings me my early breakfast while Suellen furnishes me with a nourishing lunch.
I can’t say that I am comfortable in any position. I try my best to rest in between efforts to fill out the many pages of the CDC Study questionnaire for this year. I have little desire to watch TV or make phone calls – I just feel sick and hurt everywhere. Oh well, maybe it’ll be better tomorrow when I’m finally allowed to sit up.
Day Five (Wednesday)
This morning I was hoping to be able to get out of bed and walk down the hall to the hotel’s breakfast. Not a chance. I didn’t sleep well again and I just feel so ME/CFS sick. I am able to sit up, walk to the restroom and get dressed, but that’s the extent of it. Suellen brings me breakfast as I spend the day finishing the CDC questionnaire and resting.
I continue to be uncomfortable in most positions, making it apparent to me the effects this inflammatory spinal cord lesion has had on my overall condition – especially my tolerance and resiliency.
I’m disappointed that this LP was so much more difficult than the previous two. It’s always disheartening when you realize that you’ve declined. Maybe it’s a good thing that I’m feeling this ill while answering these questions for the CDC. Perhaps my misery will somehow be conveyed to them in my answers.
The good news for today, as I spent it upright – no post-LP headache! J
Day Six (Thursday)
Today I am feeling a little better – well enough to walk down to breakfast and then tackle that always daunting task of showering and washing my hair. Suellen has been waiting and staying close by should I need anything, but I assure her that I will be fine and encourage her to go out and enjoy the beautiful day. After providing me with a lunch I can eat later, off she goes.
Why is it that I always have such high expectations prior to each trip here? “Maybe this time I can go on a drive around the lake”, or “maybe this time I’ll go on that long-wished for sleigh ride”…”maybe this time”, I always seem to tell myself. But “this time” never happens. Being ill for 23 years I am not surprised at the inability to accomplish these goals. I think what surprises me the most is the fact that I keep on setting them. It’s amazing that there remains a resiliency of spirit, if not of body.
After Suellen leaves alone and I nestle back into bed, I think once again…”Maybe next time.”
Day Seven (Friday)
Dr. P wants to see me before we head for home. Some of my labs have returned but there is nothing of significance. He discusses what I’ll do next, depending on the rest of the results. He lets me know that if I end up doing the mediastinoscopy (thoracic lymph node biopsy) that it is an easy procedure, rather routine. He relays to me the fact that Dr. G is very concerned about me, in a good way, and explains how pleased he is that Dr. G has been aggressive and remains very interested.
Even with all this positive talk, I think Dr. P can sense that I’m frustrated. I will be completing another trip, another appointment, another bunch of tests without any treatment for a condition that was considered serious and urgent when it was discovered seven months ago – and with symptoms that have slowly worsened. It is here that he reassures me that these type of neurological issues are slow to progress – one or two more months won’t matter much (to who!?).
Apparently, I must appear somewhat disheartened because suddenly the image on his face changes from logical doctor to compassionate friend….”but in the meantime you are suffering, right?” I nod my head. “When I first met you, I told myself if I could not help you, I would find someone who could.” As he holds up my file he adds “This has really become quite a challenge and I love a challenge. I’m in this for the long haul. I will not give up on you.”
Teary eyed, we exchange hugs as he reminds me he will be in touch. Sitting alone, I reflect on how many years and how many doctors I have had to go through to get this kind of support.
When Nurse D comes in, she tells me the doctor wants me to have a bag of saline and Depo-medrol and Toradol injections for the road. Apparently the “in the meantime you are suffering” comment was not for show. He is making sure I have something to help with the inflammation and pain on the way home, along with the boost in blood volume the saline gives me.
Having an illness like ME/CFS where it is not often one is offered by the medical community even a small possibility of hope or promise for relief of the constant suffering one endures, I am most thankful for this gift. Perhaps this gesture will actually help make my trip home semi-enjoyable even though I am well aware that steroids such as depo-medrol are not to be taken lightly and are not something that I could use on a regular basis.
By 10:00 a.m., Suellen and I are on the road for the first half of the drive home. By mid-afternoon I feel the steroid kick in as I become a bit energized and the edge has been taken off the pain. The side effect, however, is that I cannot fall asleep until midnight. Oh well, can’t win them all. J
Day Eight (Saturday)
Despite the lack of sleep, I do well during the six hour ride which flies by with music, prayer, laughter and loads of talking. Suellen has been a wonderful “Visit to Dr. P” companion – a true blessing. It never ceases to amaze me how I can get through these trips in spite of being so ill – accomplishing not just another doctor visit but another lumbar puncture to top it off! However, it is clear that none of it would be possible without the help of so many. Thank you angels!
Recovery from the trip went well. I felt pretty good for two weeks, perhaps due to the Depo-medrol and Toradol injections. The other good news is, nothing unusual showed up in my test results. The bad news is, nothing unusual showed up in my test results. Same old song, just another verse. Here is a partial list of the extensive things I was tested for:
In my CSF: Mycoplasma, Chlamydia, Oligoclonal bands, Lyme, West Nile, Herpes Viruses (HSV,EBV,CMV,HHV-6&7), Measles Rubeola, Mumps, Varicella Zoster, California Encephalitis, St. Louis Encephalitis, Eastern and Western Encephalitis, LCM Virus, fungus, Angiotensin Converting Enzyme (ACE), cell count, lactic acid, acid fast bacilli, malignant cells, glucose and amino acids.
In my Blood: All the conventional stuff in addition to IgG subclasses 1-4, T&B cell gene rearrangement, NK cell numbers and function, ACE, C-reactive protein, Toll 3 Receptors, cytokines, and a lymphoma panel.
The only abnormalities in my CSF were elevated HSV antibodies and a slightly elevated ACE. Not even the expected inflammatory properties in the cell count that the neurologist expected would appear now that I had been off IVIG, showed up, which makes me quite an anomaly in anyone’s book! An inflammatory lesion with no obvious “inflammation” – go figure!
My blood exhibited the usual elevated herpes virus antibodies (EBV, CMV, HSV) and slightly elevated ANA and high CD4/CD8 ratio – all which can suggest autoimmunity. But at the same time, I lack the more common signs of AI – high SED rate, C-react, protein, WBC’s etc. My NK cell function was low/normal.
So, with nothing definitive revealed, Dr. P suggested I proceed with the mediastinoscopy which Dr. G (the neurologist) was hoping would confirm his suspicion of neurosarcoid. In his words a diagnosis would lead to a more targeted treatment of Remicade (a TNF-alpha blocker) and methotrexate (an immune suppressor) which he says he has good results with in his NS patients and would be preferred to treating me empirically with a wide spectrum immune-suppressor such as high dose IV steroids.
(His view is strictly one of autoimmunity, whereas Dr. P has to take into consideration what he firmly believes as critical – the immuno-suppressed component of ME/CFS – in fact at one point stating that he could not consider treating me with high dose steroids as he would be afraid of hurting me.)
Meanwhile, however, Dr. G’s consultation with his colleagues at UCSF determined that the biopsy of those mediastinal lymph nodes that were mildly hypermetabolic on the PET scan, could not be done easily with a scope down the throat/airway. Because the nodes are too small, it would have to be done in a more invasive way – from the outside in, and thus becomes a minor surgery involving general anesthesia and an overnight stay in a hospital L.
When I suggested possibly doing it somewhere closer to my home, both doctors agreed. Not sure what the procedure entailed, with a referral from Dr. P, I made an October appointment with a thoracic surgeon at the Mayo Clinic. In doing so, I was hoping to get more details that would help me decide on whether to proceed or not – knowing that this would probably be the most invasive testing I’ve done so far and no matter how minor, it would not be easy on me.
In the interim, I noticed that each flare-up brought me to a new level of worsened neurological symptoms to which I did not recover. Thus continued the slow but steady progression of this disease process – whatever its name might be.
Eight months had gone by and still no diagnosis, no treatment, no cause for this spinal cord lesion. With the Holidays right around the corner, I was anxious to move forward. The next step was the Mayo Clinic – two hours rather than a two day drive from home and ironically the first place I turned to seek help when I fell ill in 1990, only to be told there was nothing physically wrong.
Back then, I was sent home with the assumption I was depressed and the suggestion that counseling might help. Funny how life works. I had come full circle. Gee, I wonder if counseling 23 years ago would have prevented this spinal cord lesion (she says with sarcasm). Guess we will never know. J
Til next time…Feel good!
Next stop…Mayo Clinic.
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