(Corinne had done very well- moving from being most bed-ridden and being in a wheelchair to being able to fly to California for a visit to relatives. A sudden and unexpected relapse, however, wiped much of her progress away. She was still more functional than but she’d begun experiencing some troubling neurological symptoms. Unfortunately there was a problem with publication that prevented comments from appearing. They will appear in Corinne’s next blog coming up shortly- Cort.)
Having ended my previous blog from my Aug 2012 visit stating that I was experiencing worsening neurological symptoms, I will now describe the ensuing trip to Incline Village, NV and my consult with Dr. Peterson regarding my condition.
Because of the holidays and the difficulty for me to travel during those months, it has been six months since my last visit – longer than Dr. P would prefer. In the interim my local doctor had ordered a lumbar MRI because of my complaints of consistent bilateral lower extremity numbness, tingling, pins and needles along with the sensation of constriction and hypersensitivity. Those results came back negative.
The foot numbness had started over a year ago but now it was progressing up both legs and I had developed a pressure sensation in my mid-back, similar to being jabbed by a broom handle along with numbness and tingling in the last three fingers of both hands. The latter resulted in my local doc diagnosing me with ‘peripheral neuropathy’ and referring me to the local neurologist who was booked up for three months.
That would give me the opportunity to see Dr. Peterson first, which is exactly the way I wanted it…so off I went, flying there by myself even though I was struggling. In the meantime I had remained on the same protocol.
- IVI (Gamunex) every other week
- 2-3 L of IV saline/week
- 250 ml Aminosyn 8.5% (amino acids) mixed with 250 ml dextrose (D5W) once every 7-10 days by IV
- Procrit (4,000 units) injection, once every other week
- Valtrex ( 500 mg BID)
- Fludrocort (Florinef) (.025 mg/daily)
- Klonopin (.5 mg) @ bedtime
I had also started taking OTC meclizine (generic Dramamine) at night for dizziness which I experienced upon closing my eyes to go to sleep, akin to the rising and falling of a boat on rough waters. Even the tiny doses I was taking helped significantly.
This was the scenario as I embarked on my 9th visit …
Corinne at Dr. Peterson
- Type of Practitioner I'm Seeing Internal medicine
- Number of Years I've Seen This Practitioner 3
- Number of Years I've Had Chronic Fatigue Syndrome (ME/CFS) 20 +
- Number of Visits to this Practitioner a Year 4
- My Current Activity Level (1-10) is 3
- Since my Last Visit My Health is Trending Somewhat worse
- ME/CFS Treatments Taking IVIG, Probiotics, Valtrex, IV Saline Solution, Klonopin, Florinef (Fludrocortisone)
Day One (Sunday) The Trip
Thankfully, the weather is clear and the flight smooth and uneventful. Touchdown 11:00 AM. Check-in @ The Hampton Inn, Truckee by 1:00. Bedtime – 4 pm.
Day Two (Monday) Witnessing History…and taking tests!
As usual I schedule an early appointment and good ol’ reliable Skip, my local hired driver, deposits me at the door of Sierra Internal Medicine just in time. I’m quickly led into an exam room while exchanging greetings with the staff I have grown to know so well.
When Dr. P enters he asks if I’m alone (not knowing what’s to come I find this question quite prophetic). I tell him I am and then go on to explain my symptoms. As an afterthought I add one – one that my gut tells me might be a decision-maker…
”First thing in the morning when I bend my head forward, chin to chest, I feel an electric sensation run down my legs. It’s not painful, just strange; like I have stuck my finger in a low-voltage electric socket”.
Following up the bad news (well, I guess it can’t be all ‘bad’ if it keeps me from doing the exercise stress test J), with some good news. I tell him that since being on IVIG (6 months now) I’ve noticed much less soreness in my cervical lymph nodes. There are now days when I don’t even notice them. They had been quite bothersome the previous months when Dr. P told me they were the result of my EBV reactivation. I’m hoping this improvement will show up in this visits labs.
The appt ends with him handing me my lab requisition. This is usually how the first day goes. As I exit the room and head for the LabCorp down the hall I glance at the order and recognize the letters M R & I in the corner…..Not again??!
FDA Decision Day at Sierra Internal Medicine
After ‘donating’ many vials of blood and a cup of urine to the lab I head upstairs to the IV room to infuse a liter of saline. Coincidentally, today is Feb 3rd, the day the FDA is to make their final decision regarding Ampligen, and since it’s Monday, it’s also Ampligen infusion day. I feel like I’m watching history being made as I watch patients texting, emailing and talking on their smart phones to the agency. One person has the FDA on the speaker phone. As the phone is passed around each patient or caregiver is given the opportunity to tell their story and plead their case. It’s quite moving to hear and the similarities in the patients stories is amazing, yet sad. I’m very grateful and impressed that so many are working so hard for’ the cause’.
While infusing my liter of ‘pick me up’ the nurse assists in scheduling my cervical MRI which I decide to do ASAP. There’s an opening at 3 pm, so after my 45 minute infusion I have a couple of hours to kill. Finding a comfortable chair in the lobby I plop down next to the fireplace and munch on some trail mix. It seems I rarely have time to eat when I’m here and today is no exception. This is why I always make sure to have a big breakfast.
The MRI has to be done in Reno 40 minutes away. The test itself is timely and quick (maybe 20 minutes) so with a warm bowl of Panda Express in hand I’m back at the hotel by 4 pm.
Day Three (Tuesday)….”More Tests”
My appointment today is at 11:00 and by then my MRI results are back and the news is not good. For months my symptoms have been suggesting spinal stenosis and surgery is in my future but this was…..actually worse?? Before hearing the results I jokingly ask Dr. P. if I will be needing Peyton Manning’s neck surgeon. That draws a smile but the jokes on me.
The doctor tells me that my spinal cord is showing abnormalities which could be consistent with demyelination and that I need to seriously consider another lumbar puncture to rule out multiple sclerosis (M.S.)and test for other possibilities.
I sit in shock.. Demyelination? MS? Another lumbar puncture?….(When I’m here alone?)
The first question out of my mouth is “How does this happen?”. His response – “Your immune system – it’s messed up”
“But, but”, I say “We ruled out M.S. the first time you did the lumbar puncture 3 ½ years ago”
“This illness progresses…Things change…And that symptom you mentioned when you bend your head forward is called L’hermettes’ and it’s a classic symptom of M. S. “
(Sigh). I know I do not want anyone else to perform a spinal tap on me and I know I don’t want to go all the way home and back again, and since the LP would have to be done tomorrow, I need to make the decision NOW.
Knowing that I’m alone and have a lot of logistics to consider Dr. P. exits and sends Nurse Jane in to help.
Having done an L.P. before, I’m well aware that the challenge is not in the procedure itself – that’s a piece of cake – but in the 48 hours following which one must lie flat or risk the repercussions; aka – a MAJOR HEADACHE!
Jane, who could very well have a pair of wings on her back as far as I’m concerned, assists me in ‘putting all my ducks in a row’. Let’s see, I have Skip, my cousin Traci who lives in Reno, the hotel staff whom I’ve come to know well…I think I can do this…”Yes, let’s do it!”
As I get ready to leave Nurse Tammy informs me that the doctor wants me to have CT scans done on my neck and lower back to compare side by side with my MRI. Fortunately this can be done at the Incline Village Hospital just down the road.
After a call to Skip, I’m on my way to my first ever CT scan. Everything goes smoothly so I’m back at my hotel by 3:30. Oops! Did I miss out on lunch again? While I was being scanned Skip picked up two containers of fresh, homemade soup for me from the local deli. These are supposed to go into the fridge to provide post LP meals but I decide to enjoy some now. Exhausted, both physically and mentally, I call it a day.
Determined to make my last meal upright a big one I gorge myself at breakfast prior to my 6:45 AM pickup. Because I will be spending the entire day at the office I have all I will need in hand, including food and drink.
I am advised that a little caffeine can help with any possible headache so I bring a small can of Pepsi along with plenty of H2O. My lunch will be a banana and a pureed butternut squash soup which I can easily sip through a straw. Drinking straws will be a key to obtaining fluid and nourishment while lying down….Ever try eating or drinking while lying flat?
I arrive on time for the 7:30 appt. As expected, the procedure is a piece of cake with the longest time spent waiting for my cerebrospinal fluid (CSF) to drip, drip, drip into the four tubes Dr. P uses to collect enough fluid to be able to freeze for future tests and studies.
As is commonly the case with ME/CFS patients my CSF pressure is higher than normal but Dr. P. informs me it’s lower than last time. I then mention I would like to envision what I would like the tests to show; in order words, “hope for the best” but I’m confused as to what that is, so I ask, “What would be the best case scenario?”
“That’s a very good question” he answers, “Inflammation from viral reactivation”.
In just a few minutes the procedure is done and I am moved to the recovery room. Dr. P relocated to this new building about a year ago and it’s obvious this room was designed with this purporse in mind as it comes equipped with its own restroom and is quiet and comfortable. I know I’ll be spending the entire day here so I request, and am given, 2 liters of saline to help replenish the CSF I’ve lost. Naps, lunch and phone calls follow and before I know it it’s 3:30 and it’s time to go.
Cousin Traci is the one who will transport me to the hotel….there’s just one problem, however, her passenger seat does not fully recline. (Remember, I’m supposed to lie as flat as possible) and the struggle to crawl in and then try to remain horizontal in a partially upright seat….is painful. The 30 minute ride seems like an eternity. Thankfully I had received a ½ dose of a Toradol injection to help with the possible pain which can result from such contorted positions.
Once we arrive I crawl into bed and all is well. Traci will spend the night down the hall w/her two young children (who are so excited and think they are on vacation J) just in case anything unusual happens. Before I left this morning I had prepared my room: everything I will need is strewn across the my double bed, the bedstand and on a rolling chair nearby. I’m only allowed to get up to use the restroom – bent at the waist to keep my head at heart level – so everything must be close by.
Off to sleep I go, counting the hours til I can sit upright again…8 down…40 to go! J
Day Five (Thurs). “Just What I Need”
My shoulders ache from lying flat on my sides all night but ‘so far so good’ in the headache department. The hotel staff kindly delivers my breakfast this a.m. while Traci stops by to check on me before heading home. Yes, angels all of the them. I am, no doubt, set for the day.
Now that it’s been 24 hours post LP I can use a small pillow …Ah…much more comfortable! It’s a bit awkward reaching and lifting things while lying down so my arms are starting to fatigue, however I can spend the entire day resting which, coincidentally is exactly what I need. I’ve been ordered to spend 2 days in bed – I don’t have to feel guilty…I’ve been ORDERED TO REMAIN IN BED…and I enjoy every minute of it J
Day Six (Fri) “So, Now What?”
I had originally been scheduled to leave today but because of the circumstances I had to reschedule my flight. Instead, I am to see the doctor and also receive my amino acids and saline IV’s. I start out by slowly sitting up on the side of the bed and then standing upright. Thankfully, I feel just fine.
I arrive at the office early so as to get my IV started prior to my appt. The doc is running a little late but when he finally enters I have a list of questions ready to ask. I soon realize, however, that they are mostly hypotheticals and are inappropriate at this time. He does inform me that my CT scans did not show any tumors and that he wants me to wait to see the neurologist back home after my viral tests have returned.
He does answer my question of whether I should continue my current treatment protocol with a “Yes”. When I ask him if taking gabapentin could help with the ‘neuropathy’ he says “Not necessarily”. He does add, however, that if the meclizine helps with the dizziness I can continue it as needed.
There is one issue I’d like clarification on but am a little hesitant to ask, for fear of what the answer might be…but…well…here goes:
“Dr. P – I’ve often heard that things like mitochondria may not be damaged but just dormant or turned off…My question is, with regards to my spinal cord…
He interrupts me…”I knew you would ask this. Yes, if it’s inflammation, it’s reversible”.
Several times during this week and again now, I ask him if Ampligen would have helped or prevented this. He never answers, perhaps because, although Dr. P had told me in the past that I was a perfect candidate for the drug, I learned from another patient that my positive ANA might not have qualified me for the study. This is probably why he enrolled me in the compassionate care program (which has been full all this time). So why should he tell me something would have helped if it was indeed never an option?
Or perhaps he was still ‘shell-shocked’ by the FDA’s decision earlier in the week and really doesn’t know what to say at this point regarding the future of Ampligen.
My final question brings of the reality of my situation to the forefront. “I was going to ask you when you want me to return for the next visit, but ….if I have MS or something else…I guess I’m not sure if I’ll even be a patient of yours….or if you will be seeing me again?”
He hesitates, and then answers convincingly “I’m going to say three months because I feel…yes, you will be a patient of mine..”
And with that we say our good-byes – for now! The good news is that I made it through the day without a post L.P. headache J
Serum – NK cell function is normal (3 times in a row!); IgG subclass 3 remains low (but barely); Sjogren’s Antibodies remain elevated (but lower each of the last three times measured!); ANA remains positive; EBV titers remain elevated (however they have been lower each of the last three times).
Perhaps the IVIG has had some positive affects on the EBV, Sjogren’s and NKC function
Cerebrospinal fluid (CSF) – No malignancies found. One oligoclonal band seen (four or more would signify MS). Normal lactic acid, IgG and glucose levels. Negative for Lyme, EBV, HHV-6 & 7, mycoplasma, West Nile, chlamydia, measles Rubeola, mumps, Varicella zoster and various other viral encephalitises. Slightly elevated amino acids, glycine and cystine, but “not enough to suggest a specific disorder”. Increased titers of Herpes Simplex (HSV), but it is “undoubtedly from cross-reactivity” as I show no evidence of HSV encephalitis.
Neurologist Visit and Conclusion… “If It Only Had A Name”:
Since nothing substantial showed up in the labs, Dr. P’s letter to the neurologist introduced me as someone with a history of immunosuppression with viral reactivation. (Thankfully, he never uses the diagnosis of CFS!)
In my 20+ year history with this illness, I have never had a good experience with a neurologist so I was a bit leery of this visit. The neurologist’s physical exam ruled out MS but as stated in his report, “her exam is free of neurological deficits, rather it is characterized by extreme hyper-sensitivities to various stimuli, especially light and oculocephalic movements.” (Perhaps the fact that I practically screamed when he shined his pen light into my eyes and the fact that I almost kicked him in the crotch when he lightly tapped my knee, had something to do with it J ).
After observing my labs and agreeing that my immune system is pretty messed up, he decided to test me for an auto-immune disease called Neuromyelitis Optica (NMO), not saying much else about it, except to liken it to a ”wild goose chase” and adding, “but since you’ve been chasing wild geese for 20 years, why not one more.” He then rather flippantly suggested I research it (which I didn’t, as I had no desire to waste energy on something I may not even have.) When I asked, “ If not NMO, then what?”, he threw up his hands and gave me the I-haven’t-a-clue look.
After accidentally learning that NMO often results in blindness and paraplegia (yikes !)
I was very pleased that the result of the blood test, for which I had to wait over 2 weeks, came back negative…however…even though the test is 80% sensitive, the neurologist, through his office staff, said that he was sticking to the diagnosis and suggested I have Dr. Peterson test my CSF, as it is slightly more sensitive. (Wait a minute! What happened to the “wild goose chase”???).
Since IVIG is one of the treatments for NMO, he suggested I stay on my current regimen and then, well, that was it…no guidance, no follow-up, no referrals, no suggestions, …nothing…as though he had just diagnosed me with a head cold! I felt as though not much had changed in the last 20 years and to most physicians I remain an enigma and better off not dealt with.
Needless to say, this had been scary and quite stressful. So like always, I turned to the physician I trust most…Dr.P to the rescue. Through his nurse, he advised me not to worry but to schedule an appt with him ASAP (May). I also recently found out that he had already took it upon himself to have my CSF tested for NMO…and fortunately it came back negative. So it’s back to square one…ME/CFS?
One day, in frustration during this ordeal, I sat down and wrote myself a letter, which I would like to share:
To Whom It May Concern (whom might that be???),
I consider myself a grateful person, but I am also angry and understandably so. It should never have come this far. More tests, more stress, more money, more consultations, more second-guessing…years of the same old thing as my illness progresses and manifests itself with a new set of attention-getting symptoms demanding a different diagnosis. And if this follows the same path as episodes of the past 22 years, there will be no official explanation, no effective treatment, no relief, and no acknowledgement of the severity of this illness as it continues, over the years, to progress.
None of this happens if the CDC had recognized this disease as serious and life-altering (often times life threatening) 30 years ago when they issued me and so many others, the ‘kiss of death’ by naming it Chronic Fatigue Syndrome. With that title came disrespect and abandonment, not only from the medical community (which includes researchers and thus, drug companies), but from many friends, family and society in general…all who pre-judge me because of a name that suggests merely a frivolous sort of tiredness.
I have a neuro-immune illness…what the rest of the world might call Myalgic Encephalomyelitis. It is as serious as any other neuro-immune disease and I sincerely wish everyone would recognize its severity and treat me accordingly.
I send out a heartfelt ‘thank you’ to the too few doctors, nurses, family and friends who have done just that. THANK YOU!
I‘m sure many of you feel the same way. I feel so very fortunate that even though many in the medical community may drop me like a rock because they think of me as a perplexing, high maintenance patient for whom they have no answers, one will hopefully, not abandon me – Dr. P!
Til next time…Good Health!
Keep Health Rising….Rising!