(Corinne continues her blogs of her visits with Dr. Peterson and other doctors)
Corinne’s Visits – October and December 2013
“We have to learn to let go of the life we had in order to enjoy the life we’ve been given.” – Joseph Campbell
To summarize my last blog dated September 2013 – I had returned to Dr. Peterson to have my third lumbar puncture hoping to find answers as to what was causing the cervical spinal cord lesion found on an MRI in February 2013. Test after test, including the lumbar puncture, had not revealed any answers so I was left with the more invasive biopsy of the lymph nodes in my chest (mediastinoscopy) as the next option on the list.
Ever since those very small nodes had showed up “mildly hypermetabolic” in a PET scan, this is what the neurologist Dr. G at UCSF had wanted to focus on. His suspicion was neuro-sarcoidosis even though I would be highly atypical as a sarcoid patient. When I found out that the nodes were so small that they could not be biopsied the easy way (down the throat), but would, instead, involve a small surgical procedure requiring general anesthesia and an overnight stay in the hospital, I was hesitant. At the least, I requested the possibility of doing it near home. Dr. P. and Dr. G. agreed.
So that is where the Mayo Clinic comes into this complicated picture – 23 years after I had visited them the first time, when I became ill and they sent me home saying nothing was wrong except perhaps depression. I had come full circle.
October 2013 – the Mayo Clinic, Arizona
Twenty three years ago, I had left there in frustration saying “never again”
I had made an appointment with a thoracic surgeon at Mayo in order to consult with him about the mediastinoscopy so I could make a more informed decision on whether to proceed. Twenty three years ago, I had left there in frustration saying “never again”, but here I was on my way south hoping that this time, with a glaring lesion on my spinal cord, I would get the respect I felt was lacking the first time.
The Mayo Hospital, where the surgeon’s office is, is about two hours from my home. My husband, Joe, who isn’t a fan of accompanying me to doctor appointments, agrees to drive me. Since he would be the one assisting me should I do the procedure, I felt it was important that he be here.
As we wait in the exam room, I still feel funny being here. I have a bad taste in my mouth, even after 23 years. But perhaps, I hope, changing times have changed minds.
After introductions, Dr. O.P. sits down, gives me a questioning look, and says the one word that needs no explanation – “Seriously?” He tells me this is what he asked himself after reading the order, PET report and records – “Seriously? You are considering having this procedure done for nothing but a few tiny, slightly hypermetabolic lymph nodes that could be anything? I can’t even tell if they are actually lit-up or if it’s due to background noise.”
He proceeds to explain that he does mediastinoscopies all the time and has never had a problem – but they are not risk-free. Dropping a scope down your chest past your aorta and airway is never risk-free and to do it for lymph nodes that may be too small to find is hardly warranted, in his opinion.
He adds that he does a lot of lung transplants on sarcoid patients and all have huge lymph nodes, nodules on the lungs and most are African-American males. In other words, in his estimation, the chances of me having it are slim.
I ask him to pull up the image of my C-spine on his computer and explain that my doctors feel that at this point those lymph nodes are the only abnormality that can be biopsied that may hold the answer to the mystery of what is causing the lesion. “They call that a lesion?” he mutters. He does not seem impressed. He does go on to say that if one of the Mayo neurologists insists it needs to be done, he’ll do it, but I would need to see their in-house doctor.
I am in shock – like a time capsule that just went back 23 years. In one way I am sort of glad the biopsy is not recommended and he considers it too small a payback for the risk, as I never wanted to do it anyway. But on the other hand, I have to blurt out “I cannot come back again to see a neurologist. I’m too sick!”
Thankfully, he accomodates me and finds me an appointment with a neurologist today, a cancellation, in 20 minutes! And it’s at the other campus, 25 minutes away! Dr. O.P. is yelling directions as we rush out the door, down the hall and to the car. We speed along the highway as fast as possible. Joe drops me off at the front entrance as he finds a parking spot. I grab a volunteer and wheelchair and make it up to the third floor still out of breath. As I check in, I explain the situation, not remembering the name of the doctor I am to see as it was only mentioned once, in haste. The receptionist looks at me funny. That should have been a clue.
After a few minutes a woman emerges from one of the offices, asks me a couple of questions, then begins to apologize profusely. Dr. O.P. had sent me to the wrong place! The neurologist I was supposed to see was back at the building I had just come from. It’s too late. I’ve missed the appointment.
I want to cry. She feels bad but I assure her it’s not her fault. She asks me to wait for another cancellation but I am adamant – I will not. I am exhausted. I do have to eat however, so I tell her if something opens she can call me while my husband and I have lunch. She said she will go out of her way to call each and every patient that has an appointment with a neurologist (they have at least 30 of them) that day and find out who is planning not to come. I thank her.
My head is in my hands when Joe finally finds me. I am embarrassed to have to explain the situation to him. The debacles associates with my ME/CFS and the medical community over the years are part of the reason why he has separated himself from my illness experience. And so far today, this circus act would only seem to add credence to his decision.
Joe and I are having lunch when the phone rings. They have an opening for me back at the Phoenix campus where I started in the morning. Within the hour, I am in the office of a resident neurologist, Dr. D. She appears young enough to be my daughter.
Not long after we begin, I can tell she is plenty intelligent, full of energy, with an attitude that I interpret as “I am going to cure the world!” In other words, her enthusiasm has yet to be dampened by cases like mine. My 23 years with this illness has prepared me for moments like this. I will be spending a lot of the conversation reining her exuberance in. Bringing her back down to earth, you might say.
This is the third neurologist I have seen since February. The first diagnosed me with neuromyelitis optica (NMO) and sent me home without a referral nor follow-up. It was accidentally that I had read his report and found out I was “lucky to have avoided, so far, the blindness and paraplegia that usually accompanies it.” Whoa! Why didn’t he tell me that?
The second neurologist, Dr. G. at UCSF who Dr. P. referred me to, was the reason I was here. He was leaning towards neurosarcoidosis (tests seemed to rule out NMO) and he wanted the thoracic lymph node biopsy done to possibly prove it.
Each had performed complete and thorough work-ups and yet here I was again, doing a third. No matter how many notes and reports available for Dr. D. to read, she smiles and says, “Let’s start from the beginning.” Grrrrr…… Its 2:00 p.m., I’ve been here since 8:00 a.m., this is the last thing I want to do (sigh, deep breath). My brain is fried and it is exhausting having to repeat my family history and my 23 years with this illness…
Throughout the appointment, I only mention CFS once, explaining that I am not fond of the term. She, like Dr. G. at UCSF, does not appear familiar with what ME stands for. In fact, she never refers to it, or CFS, or neuro-immune the entire time.
Several times she suggests tests and several times I tell her that once she looks at my medical packet (she hasn’t had time to do so as I am a last minute fill-in), she will see that I have done every test conceivable, including some she has never heard of. When she leaves the room to consult with her supervising neurologist and they return together, she admits that I have undergone plenty of tests.
Under her supervisor’s watchful eye, she tells me that because my immune system is showing so many antibodies to so many things she would like me to come back to see the in-house rheumatologist!
I consider myself to be a nice person, but I am not cooperating at this point. I flat out refuse to return to see any more doctors. I tell them both that I am too sick and have already been to three states to see doctors about this lesion.
I am assuming they are thinking in terms of auto-immunity (AI), but two hours into this discussion, I fail to hear anyone putting together the whole ME/CFS picture – so I start asking them questions. “What do you think about my elevated cytokine panel?” They look at each other and the supervisor responds “Well, we don’t know much about that.” “What about my high viral load?” Dr. D. suggests that I have no viruses – “you have no positive PCR. It appears you are only making antibodies to antibodies (autoantibodies).”
Having told Dr. D. my experience at the Mayo Clinic 23 years ago, she perhaps senses that I have a chip on my shoulder. She tells me that she would not have sent me home without a diagnosis back then, if she had known what they know today. She believes that 23 years ago, I contracted a viral infection that resulted in (science doesn’t know yet exactly how) an AI attack on my autonomic nervous system which resulted in POTS. She then follows that up with a request for a tilt table test, suggesting that treatment could really improve my quality of life.
I’m impressed that she has this much insight into my condition but pardon me if I am a bit edgy – “I am not doing a tilt table test. At this point, I feel like I have tortured myself enough this past year. I already know I have POTS. Dr. P. diagnosed me years ago. But POTS is not the reason for the spinal cord lesion. I am here for the lesion. That is my priority right now.”
This isn’t the only time I feel I must redirect her focus. It feels almost as if the lesion is just too complicated (not just for her, but for everyone!) and she’d rather deal with what she’s more familiar with.
After a while we come to an agreement. She understands that the lesion is the focus for now. She says the mediastinoscopy may not be out of the question but instead of me having to come back for an appointment, she will consult with the in-house rheumatologists and neurologists for me. She also agrees that I do not need any more tests except for a few minor labs that will be redone, just to make sure that nothing simple was accidently missed – such as B12, copper, zinc, vit E, folate, etc. She says she will call me in a week with a plan. I am most grateful and express my sincere appreciation.
Blood is drawn downstairs and then I wobble and weave out to the parking lot where Joe meets me in the car. It’s 4:30 p.m., just another eight-hour day at the doctors plus a two hour drive home. And I thought visits to Dr. P. were rough!
December 13 – Back to Mayo
It’s actually three weeks before Dr. D. calls me with her plan. The labs drawn came back normal except for the usual slightly elevated ANA (1.5) and elevated Sjogren’s antibodies. She says she has decided the mediastinoscopy is not necessary at this point – she doesn’t want to have to put me through that, considering everything I have already endured vs. the chance of it revealing anything substantial.
Her plan does, however, involve two more procedures. She would like me to have a lip biopsy to rule out Sjogren’s and a conjunctival biopsy for a possible sarcoid confirmation.
The past year has been financially and physically taxing for me. I am trying now to be logical and efficient when making medical choices regarding this mysterious lesion. And, of course, I am weighing the pros and cons of whether a procedure will actually result in something productive towards my healing. Thus, I argue with Dr. D. about the need for the lip biopsy.
Dr. G. at UCSF clearly stated to me that Sjogren’s place in causing myelitis is highly debated and contested in the literature and, in his opinion, while a Sjogren’s diagnosis may help explain some of my other 23-year old symptoms, it would have no effect on leading us to a more targeted treatment – or really give us any insight at all – into the mystery of the spinal cord. So, in my opinion, it is a waste of time and money.
In contrast, the conjunctival (the conjunctiva is the lining that covers the eye) makes a bit more sense, as Dr. G said that studies have shown that sometimes sarcoid can be found there. Though rare, it’s a shot since it is relatively non-invasive and a sarcoid diagnosis would tell us a lot more about the mystery myelitis.
Dr. D. disagrees. She insists the lip is the priority, and I have no idea why. Her explanation is very vague as she uses something I had said to her earlier to persuade me. During our appointment, I had told her to be prepared – that I would not fit into any of the “labeled boxes” they would try to fit me in. That no matter how hard they tried to squeeze me in, I would not quite fit. I would be “atypical this” or “nonclinical that,” but never fitting the description nice and neatly (except of course the ME/CFS box which they do not possess). So to get me to do the lip biopsy, she says “You, yourself said that you would not fix into any box – so why not Sjogren’s?”
Boy, if I hadn’t already thought that nobody had a clue as to what is going on with me, I sure do now. Really? So that’s the best you can do? Well, how about ME/CFS being the explanation, I wanted to say!
Too drained to argue, I agree to do them both, but only if they can be scheduled on the same day. And, of course, the only day available just happens to be December 26. Hey, what else would I want to do the day after Christmas, anyway? What a life! J
Merry Christmas – Tissue Needed (and not the kind you wrap gifts with)
Yesterday, Christmas was spent driving down to a Phoenix hotel to spend the night for today’s procedures. The lip biopsy is scheduled first and is done in the Ear, Nose and Throat (ENT) Department. The doctor, Dr. C., is very accommodating. There is a mix-up in the coordination of how to prepare the tissue samples to be sent to Gunnar, Dr. P.’s research coordinator, who will then send them on to Dr. Lipkin at Columbia University. As I get the last minute orders from Gunnar by cell phone, Dr. C. kindly waits.
The prep and surgery take 15 minutes. Five salivary glands are removed from the left side of the lower lip for Gunnar and five for Mayo, for a total of ten. Dr. C. does comment that they are just “fishing” regarding this procedure and any answers it may provide regarding the myelitis. Unfortunately, that is not the last time I will hear this.
Putting in a few stitches, he warns me that it will be sore when the anesthetic wears off. I am also told that nerves have most probably been cut and I may feel numbness on that side of my lip for a long time.
Then I move on to the Ophthalmology Department for the conjunctival sample, using a wheelchair and volunteer. About the time we arrive, my lip starts to hurt until it becomes almost unbearable. The only thing I can think of that might help is ice, so I ask the volunteer if he can get me some from the cafeteria. I suck on a cupful until the pain subsides a bit. I am surprised at the amount of pain, but considering the lip area is so sensitive and filled with nerve endings, I suppose it’s no surprise.
The ophthalmologist is congenial and efficient. He looks inside both lower eye lids (that is where the sample is taken) to see if perhaps something abnormal would suggest taking the biopsy from one rather than the other, thus increasing the odds of finding something. But he finds nothing – both look perfectly healthy. Then he too mentions the word “fishing.” The tone in his voice suggests this is just a crap shoot and that the odds of finding something are very low. But he does say that I am doing the right thing by trying all of the least-invasive procedures, as I can possibly “get lucky” without having to do more.
None of this is news to me but it’s still disheartening to hear both physicians say it. I have been chasing answers to this spinal cord mystery for almost a year now and had already made up my mind that these were going to be the final two procedures I would undertake, other than the scans I must do every few months to monitor the lesion. I feel satisfied that I have given it my all.
A couple of snips and the surgery is over. I ask if this will hurt as much as the lip does and he says it will. Yikes! He hands me an antibiotic ointment to apply daily and then, I’m on my way.
On the drive home, Joe comments on the swelling that has begun on my face. Luckily, I do not have anywhere near the pain in my eye as I do in my lip. I must continue to suck on ice in order to bear it.
I have trouble sleeping that night as my lip throbs. The next morning I awake to Rocky Balboa staring back at me in the mirror – “Yo Adrienne!” My right eye is swollen shut and my lower lip looks like I had a bad silicone job. Both are primarily black and blue, but include every color of the rainbow. What a sight! J
Despite always having elevated Sjogren’s antibodies on my labs, my pathology report is negative for Sjogren’s. “Non-specific inflammation” is all that is reported. Likewise the conjunctival biopsy is negative for sarcoid – “subepethelia chronic inflammation” – states that report. Ha! Years ago I had a biopsy done on the inside of my stomach and it showed “chronic inflammation of non-specific nature.” Add in my spinal cord and I’m just a walking chronic inflammation.J Personally, I feel the mediastinoscopy would have showed the same. So though we may know more about what I don’t have, we don’t know more about what may be the cause of the myelitis.
My follow-up phone conversation with resident neurologist Dr. D. at Mayo was a bit frustrating. Regarding the lesion and the possibility of treating it with immuno- suppressors such as steroids, which is the standard of treatment for auto-immune induced myelitis, she would not touch me with a ten-foot pole.
When I questioned as to whether it is acceptable to do nothing, referring to scarring, she said that spinal cords “do not scar, per se” – a statement that Dr. G. at UCSF vehemently rebuked. She said that these type of lesions do one of three things: go away, stay the same or get worse (duh?).
If monitoring shows it is getting worse, then she would consider treating. When I told her my symptoms have gotten worse over time (the same areas-back, arms, hands, buttocks, legs and feet have progressed in numbness, constriction and pain), she said that unless I had new symptoms – new areas affected – it was not considered “getting worse.” This too was a statement that Dr. G., to put it kindly, totally disagreed with.
When asked if going back on IVIG would help, (she had suggested before that it may have been “too little too late” when I was on it when the lesion was discovered), Dr.D said it was the only thing she would consider, if and only if I came down to do a baseline tilt table test first and a complete POTS autonomic reflex panel.
What? I have a serious myelitis that could possibly benefit from IVIG and you would withhold it unless I make another trip down and do a series of tests for POTS which is completely separate from the spinal cord issue? I felt as though she were dangling the proverbial carrot in front of me, baiting me, “I’ll do this for you, if you do this for me.” Her reasoning centered around the fact that the IVIG might affect the POTS and so affect the baseline data. But at this point, I just wanted help for my lesion. I was not concerned about POTS data!
I may have been persuaded had the “E” word not followed. When I tried to pick her brain about POTS treatments she might have in mind, I mentioned knowing about drugs like Florinef, Vasopressin, Midodrine and drugs I was taking for volume like Epoetin Alfa with IV saline, but was there really anything new? Her answer – “Yes, there are new drugs (pause) but the main component of the protocol would be exercise!
Well, that was it. She had totally lost me and any interest I may have had. I blurted out “But I told you I cannot exercise.” She casually remarked “not even on a recumbent bike?” (In other words, come on, who can’t do that?).
I was appalled. In a not too friendly voice I did the best I could over the phone to bring her back to reality. I told her that although she may not understand my ME/CFS exercise intolerance, how can she ignore the fact that I have an inflammatory lesion on my spinal cord that affects everything below it? My legs do not feel nor do they work properly! (At this time, because of the lesion, I was getting constriction and cramping in my feet and calves when I walked more than a few feet…besides the persistent numbness and hypersensitivity throughout my back arms and legs.) How can I exercise?
I do not even remember if she answered. I had emotionally disconnected by that time. I knew Mayo was not the direction I wanted to go. My exercise intolerance is not based on deconditioning. How could it be when it began the day I got ill, and I was as fit as they come? Mayo did not get it and they were not going to address the lesion so it was time to move on.
I must also add that I did not like the fact that though I had been adamant that they send reports and include the doctor who knows me best and referred me here, Dr. Peterson, and the neurologist at UCSF, Dr.G, in their consultations they, despite having been given all contacts, did not fax, email, phone or snail mail either doctor.
So, one year since the discovery of the lesion, I still have no answers. My lip has a big knot where the biopsy incision was made and remains numb on the left side, and when I have a pain flare, it, and the eye, are one of the first things to ache. I do not regret, however, pursing the possibility of “getting lucky.”
The next stop in my journey is to return to Dr. Peterson’s in March 2014 for a consult with him and, jointly by phone, with Dr.G. at UCSF regarding what to do next. Meanwhile, my three month MRI shows a stable lesion but my symptoms gradually worsen with each flare.
As far as my meds go, as of March 2014 (pre-Dr. P. visit), I continue with my IV saline (two liters twice a week) with the Epoetin Alfa injections (twice a month) for blood volume. I remain on Klonopin (.5 mg) for sleep and Valtrex (500mg twice a day) for some herpes virus control. I continue meclizine as needed for dizziness.
By suggestion of my local physician (who has been an absolute angel whenever I need help implementing Dr. P.’s protocol at home), I started gabapentin (200 mg twice a day, but am titrating up) for my nerve pain, and topiramate – a migraine medication – (25 mg once a day) for my headaches. As of this writing it was too early to tell for the gabapentin, but the topiramate seemed to be helping with my head and my ability to use the computer. J
Next stop Dr.P’s, March 2014…with my good friend Cort and his two canine buddies River and Sky as my ‘drivers’ :)…
‘Til then…feel good!
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