I apologize for this diary, but I have never been this frightened in my life. I value this community and know that there is a great deal of knowledge within its members, as well as kindness.
A week and a half ago I experienced a sudden loss of strength in both arms and both legs. Since then it has only become worse. More below the fold.
My symptoms. For the first several days this weakness was accompanied by pain, like a toothache in each limb. Fortunately after several days the pain subsided (although it resurfaces occasionally) but the weakness has progressed.
I now find it difficult to carry even a few pounds for more than a short distance. Carrying two half-filled garbage cans from the garage to the road, a distance of 50 feet and a task I have performed countless times, can barely be accomplished, with my arms feeling as though I have carried them for three blocks instead.
The closest sensation I can compare this to is the feeling one gets when one has completely fatigued one’s muscles. If you’ve ever done curls with a set of barbells until you just couldn’t lift them anymore, and when you put them down you still felt as if your arms were hundred pound noodles, then you have some idea of what this feels like.
There is also a diminishment of fine motor control. Moving the computer mouse around and clicking, with the heal of my hand resting on the desk, I find that my fingers don’t move the way my mind is telling them to. And if I’m on the computer for more than a little while my arm seems to turn to stone and I cannot close my hand enough to even grasp the mouse.
I am a crossword puzzle fan, and handling a pen, filling in the little squares, and recapping the pen have all become difficult.
At times I now stagger around as though drunk, trying to remain on my feet (so far successfully,) and regain my balance. I have a problem with foot drop that has caused me to stumble and nearly fall several times. I experience this with my right foot about four or five times for every time I experience it with the left. Other than that the symptoms are entirely symmetrical.
My torso remains unaffected, my breathing remains fine, and my vision is unaffected, except that occasionally when I am tired I have spells where I feel “spacey," headachy and in a fog, and I have difficulty fixing my gaze on a fixed point. These spells pass within five minutes or so.
My medical history. I am a caucasian male in my mid-fifties, without health insurance. I do not qualify in Illinois for Medicaid, as I am childless and my car, although nearly eight years old, is still worth more than $2,000. Under the ACA’s Medicaid expansion I will become eligible sometime next year.
Fifteen years ago I was diagnosed with fibromyalgia. The onset of this followed a serious back injury that left me in pain for over a year. I could fill another diary with the story of my efforts to combat that insidious affliction, but I now see it as a walk in the park compared to whatever is going on now, which is a different animal entirely. I have hypertension, controlled through medicine, and high cholesterol, also controlled through medicine.
My meds. First, my OTC medications: A twelve hour Claritin taken in the morning a couple hours before I have to get up acts as a mild stimulant (hence me not taking the 24 hour version,) and on occasion brings some relief of my fibromyalgic pain, and Alka-Seltzer, twice a day, as a way of getting aspirin into my body quickly.
I have taken a low dose of a statin, Lovastatin, for several years now, which has successfully lowered my cholesterol. I was reluctant to go on a statin, as they have been linked to Peripheral Neuropathy. When my father was 70 he developed idiopathic bilateral P.N. in both his legs. I watched what it did to him over the next twenty years, with him finally being confined to a wheelchair. He was not diabetic, nor am I. The cause of his neuropathy was never determined.
About three days after the sudden onset of my symptoms I recalled how my Dad, in the early days of his P.N., would speak of how his legs felt heavy. Just like my arms do (and to a lesser extent my legs.) These past days, in the evening, when I am tired, I sometimes notice a very slight tingling in my hands and feet, minor enough that, were I not on “high alert” I might not even notice. I took a sewing needle and poked all up and down my arms, all sides, my hands, all sides, and my feet, all sides. I felt every pinprick.
Years ago, when I had great insurance, I saw a rheumatologist for a year for the fm. He stuffed me full of a variety of drugs, and after a year with no particular improvement, I dropped both the rheumatologist and the meds.
One of the drugs the rheumatologist prescribed for me was a hydrocodone/acetominophine tablet. He wanted me to take six a day. The most I could ever manage without turning into a zombie was four. Some years later I would discover by accident that a small dose acts as a mild stimulant and sometimes brings some pain relief. I have a prescription for this at the 5/325 dosage, and I break them in half and take one-half each morning.
I also take a low dose of Atenelol, which keeps my blood pressure nicely in line. I am just shy of 6’5” tall, and weigh 220 pounds, having lost around 16 pounds in the last half year, with the goal of losing 20 more.
I see my regular MD about once every eight months, paying out of pocket for my visits. He has tried several prescriptions in an attempt to help the fibromyalgia, none of which provided any relief and all of which brought bad side effects.
About a year ago I recalled to my MD that one of the medications the rheumatologist had prescribed for me was the sleep aid Ambien. Fibromyalgia is by its nature intertwined with a sleep disorder, and over the years I’ve found that nothing determines whether I have a bad day with my fm, or an even worse one, than the amount of sleep I managed to get the night before.
My MD prescribed a 5 mg Ambien at bedtime, and it has probably done more to alleviate (but by no means eliminate) my fibromyalgia symptoms than anything I've ever tried. Although it is supposed to be only for short term use, I have continued to use it and it has continued to provide me with a good three to four hours a night of decent sleep.
Until a few weeks ago, that is. In mid July I was diagnosed with severe depression with suicidal ideation. That could fill up another diary. Fortunately I wound up at a wonderful facility for a four day stay, and the local hospital whose ER sent me there has waived most of their bill in response to my completing a charity care application. I have completed a similar application for the behavioral health hospital I stayed at, and am still awaiting their decision.
My first day in the hospital I was put on the antidepressant Wellbutrin, 200 mg a day for the first four days, and 400 mg per day since. After discharge my county’s health department was absolutely wonderful in arranging for me to see a counselor every two weeks, and a psychiatrist every month, with no out of pocket cost to me.
I have been extremely pleased with the Wellbutrin. My mood has improved considerably, although it is being extremely challenged now. I went through a gamut of side effects initially, but they were all transient and vanished within a matter of a few hours to a few days. The health department psychiatrist informed me that since Wellbutrin is a dopamine and norepinephrine re-uptake inhibitor (as opposed to a SSRI, a selective seratonin re-uptake inhibitor,) I might find it would help with the fatigue that accompanies fibromyalgia. And he was right.
Unfortunately, after perhaps four weeks on the drug, this energy boost had translated into a problem of sleeplessness.
On my next visit to the psychiatrist I spoke to him about this problem. He issued a new prescription for Ambien, at 10 mg, or double my usual dose. I asked him if, before I spent money on the RX I could just take two of my 5 mg tablets at bedtime to see how it worked out, and he said “Absolutely.”
That night I took the new dosage, and I fell asleep quickly and remained so for six hours. The next day I felt decidedly “hung over,” as though my head was stuffed with cotton. I was not alarmed at this. I saw my counselor that very afternoon and told her that I didn’t know what I should do that evening. She said that my body was probably getting accustomed to the new dosage, and that I should continue it that evening.
I did so, and once again fell asleep quickly and slept for perhaps five hours. The next morning I awoke without the hung over feeling, clear-headed and rested.
But only a few hours later I experienced the sudden loss of strength and the toothache like pain in my limbs that I detailed earlier.
What I've done so far about all this. My first reaction of course was that the increased Ambien dosage was behind it. That evening I went back to my usual 5 mg dose, the next night I cut that in half, and the following night I stopped it completely.
Ambien is a drug with a short half-life. It is eliminated from the body quickly. Yet my symptoms remain.
Four days after the onset I became so concerned that I resorted to the poor person’s healthcare resource of reluctant choice: The emergency room.
The ER doc’s first response was that I did not seem in imminent danger, and that I needed to see a neurologist for tests, such as EMGs, muscle biopsies, spinal taps, MRIs, etc. Of course I have no way of making this happen without insurance.
He went through a number of conditions that he thought were unlikely, given how my symptoms presented. He thought it unlikely to be Multiple Sclerosis or Guillain-Barre Syndrome. He talked at length about Myasthenia Gravis until I said “Doesn’t that usually affect the eyelids?” and he said “Yes, you see, you don’t fit any of those things.” I didn’t ask him, and he didn’t mention, ALS, but those symptoms generally first present in only one limb, or the face. Believe me, by the time I went to the ER I had looked up just about every degenerative neuromuscular disease I could think of.
The ER doc had some blood drawn, and while waiting for the results said he was going to call my regular MD.
When he came back with the results of the blood panel (all normal,) he said that he had spoken with a “colleague” of my MD, who had replied “Maybe it’s the Wellbutrin. I’ve seen it before.”
I was discharged with the instructions to contact my psychiatrist about the Wellbutrin and the Ambien, and to see my regular MD.
I left a message with my psychiatrist’s nurse, and the next day he got back to me and spent a good ten minutes asking me questions. He called me back an hour later to say that he’d spoken with the psychiatrist, and that he thought the weakness might be from the Lovastatin. He urged me to go back on the Ambien, but only 2.5 to 5 mg a night.
That afternoon I saw my regular doctor, who quickly dismissed the notion that it could be the Wellbutrin or the Lovastatin. I told him what his “colleague” had said to the ER doc, and that perhaps he could speak to her. He informed me that the woman the ER doc spoke to was merely a doctor with the service that my doctor’s practice contracts to take phone calls when his office is closed. I doubt my doctor has ever even met her. Some “colleague.”
I gave my doctor a copy of my blood work results from the ER, and he took a urine specimen. He said the only abnormality in the urine was an elevated Ketone level, but said it wasn’t particularly high and wouldn’t be causing the symptoms. He told me that ideally I should see a neurologist (I’d have done that pronto if I had insurance,) and that I should come back to see him in two weeks.
I have cut my Lovastatin dosage in half, and am now taking the Wellbutrin every other day. I take a half of a 5 mg Ambien, or 2.5 mg, at bedtime. None of these drugs are ones you want to quit cold, and I probably initially tapered off the Ambien far too quickly doing it over just three days. I am hoping that within another week or so to be off of all of them. So far I am seeing no improvement, but rather a continued degradation.
Last Friday I applied through the county’s health department for a program that, should it be determined I qualify, would assign me to a primary care physician who would charge only ten to fifteen dollars per visit. This physician would also be able to refer me to a specialist, should there be one participating in the program. It remains unclear what my cost would be for any tests, should there be a neurologist even participating. In any case it will be four to six weeks before the application is processed, then who knows how long before I could see my new GP, and then some additional time to see the specialist. I wonder if by then I’ll be in a wheelchair.
What's next? So, if you’ve been good enough to stay with me this far (and may the FSM bless you if you have,) this is basically what I am asking: Do you have any idea what could be going on with me? And, do you have any idea how I might expedite receiving proper medical attention?
Right now I’m one of those “fallen through the cracks” individuals, who will be covered under the ACA, but not for many months.
IF I understand correctly, in another month I am supposed to be able to go online to the exchange run jointly by Illinois and the federal government, and shop for an insurance policy. I don’t know where I’ll get the money to buy coverage, but again, if I understand correctly, the insurer will not be able to refuse coverage due to preexisting conditions, and they must charge me according to “Community Rating,” which is to say as a nonsmoking male of my age, rather than a nonsmoking male of my age who is frightened to death about what is going on with his arms and legs.
It has been a lengthy and difficult process typing this, and I apologize for any misspellings and typos. ANY advise, suggestions, input, etc. would be appreciated beyond my ability to adequately express.