My (too long) quest for a shingles diagnosis

To treat shingles, you must get on antiviral meds within 72 hours of its onset. Unfortunately, my experience revealed that 4 out of 5 doctors have no clue as to what the symptoms of shingles are. TL;DR - it took me ten days and multiple doctors to finally get what should have been a simple diagnosis of shingles.

Quick background: the pain started suddenly, as if someone had stuck a hot poker through my sciatic nerve. My entire lower right hip was in agony. Apparently, though, location of pain isn't that important to most doctors. Although, at least in the case of shingles, it really really should be.

The first doctor I consulted ordered an ultrasound and CT scan but found nothing conclusive besides some stones in my gall bladder. Which for reference, is located way north of where the pain was. Though I told the doctor those stones had been there for a few years and I was certain were not the cause of the pain (not to mention not even near the site of the pain), he recommended me for follow-up with a surgeon specializing in gall bladder surgery. Strike one.

Strike two was the first doctor's partner, who called me three times the next day to insist I come in on an emergency basis for gall bladder surgery. To get him off my back, I agreed to see the surgeon first thing the next morning, fully intending to ask that surgeon to re-examine me first.

Fortunately, that surgeon did prove to be wiser than the previous two doctors. He re-examined me and said while he didn't know what was wrong, the pain almost certainly was not being caused by my gall bladder. I will never be able to thank that surgeon enough. Had I had that surgery, not only would it have been unnecessary but the stress on my body would have been even worse and there's no telling what impact that would have had on my (then still undiagnosed) shingles. The surgeon was strike three, but I don't blame him. After all, he's a surgeon. It would be like expecting a great chef to also know how to fish. (Him, the surgeon, being the great chef, of course).

After the surgeon, I visited another doctor who unfortunately was no better than the first two (surgeon excluded). She tried to convince me that scar tissue had pulled my gall bladder down so it was seated closer to my hip. Even though the CT scan showed all my organs in their proper place? Even though the surgeon had already struck down the gall bladder theory? Really? Wow.

After telling her (I thought nicely) that I really wasn't willing to consider her 'gall bladder has moved' hypothesis, she then prescribed muscle relaxants and a laxative - which is doctor-speak for "you contradicted me so therefore you're a hypochondriac who needs to take a chill pill and a poop".  And frankly, I think she's a quack. But whatever. Strike four.

Finally, the 5th doctor I visited (fifth!) nailed it. Even before I finished describing the pain, he immediately diagnosed shingles. Yes, I now adore that doctor. Yes, I think he's a very good doctor and very smart. But do I think he's a genius or that it takes a genius to diagnose shingles? No. He was, perhaps not so simply, just a very good doctor who cares enough about his patients to actually hear and weigh what they are saying. And he knows his shingles, thank goodness.

So what went wrong with all the others? I think back to that first visit at the first doctor, when I was still well within the 72 hour treatment period. Now that I've had a chance to learn all about shingles, (much of it from firsthand experience!) I realize there were so many clear shingles indicators it boggles the mind as to how any of them missed it.

First, the pain itself was so very typical of shingles pain. In addition, I'd complained about decreased urination, which (I've since learned) is another hallmark of shingles if the sciatic nerve is involved (which mine was). They even cath'd me before the ultrasound and the nurse kept commenting on the volume of urine that resulted (a lot!) and how unusual that was. A common side-effect of contracting shingles in the sciatic nerve is its effect on the bladder muscles, aka the bladder fails to contract so therefore you do not know you need to pee. I didn't know this at the time, of course, but shouldn't they have known?

Neither morphine nor percoset would alleviate the pain, at least not for very long. I've since learned that both morphine and percoset aren't very effective at abating the pain from shingles and their ineffectiveness is itself a valuable clue for shingles diagnosis.

Two of the earlier doctors I consulted did at least ask if I had a rash. But I did not. In hindsight, perhaps they thought that was a valid check for shingles. But I've learned - just from reading Google searches - that shingles quite often presents without a rash. After all, shingles is an acute inflammation of a nerve ganglia, not a skin condition. Rash optional. Maybe what's needed is for more doctors to read Google searches?

In any event, doctor #5, the only one that nailed it, knew right away - just based on the pain symptoms - that it was shingles. He only asked about a rash after he'd made the diagnosis. By that point I actually did have a teeny tiny row of dots - hardly something I would have called a rash and it was very late into the progression (a full 10 days after the onset of the pain).

So what have I learned from all this?
  1. An awful lot of doctors have no idea what shingles really is. They're looking for skin eruptions when they should be listening to pain descriptions.
  2. If you're not careful, a missed diagnosis of shingles can lead to unnecessary surgery with all its accompanying risks.
  3. You only have 72 hours to get treatment. Be persistent. If there's even the slightest suspicion of shingles, insist that the doctor do a simple blood test so you can start the appropriate treatment immediately if necessary.
  4. If I ever do really need to have my gall bladder removed, I will go right back to that surgeon who was kind enough to re-examine me beforehand and nixed the procedure.
  5. A good primary care physician is a gold mine. If there's any good that came out of this, it will be finding doctor #5.
I wrote this blog in the hopes that it might help someone else avoid what I went through. For anyone out there suffering from acute or chronic pain of any cause, you have my deepest heartfelt sympathy. May you find a cure.

4 comments:

  1. I WENT TO neuro thinking that was the way to go. I described the pain and mentioned a couple blisters on right hand I thought was poison sumac. He didn't even look at my hand or at beside my spine where I told him it was swollen. He just started ordering cat scans and nerve test. Went back two days later he started doing nerve test and got to arm with blisters I told him about and said oh you have shingles.
    Then they want me to pay 1100 dollars for nerve test. Long story short I called ins c0mpany we got on a three way call. Dr office was very rude, the switched me to someone else. I could hearing her typing what I said. She said hold on the some other female said, whats going on. I was already in tears and I told her I wasn't going to repeat it a third time. She said you are better and I said no I am worse. I called and cancelled next apt and girl on phone laughed. I went to a reg dr he gave me pain patch and steroids. Patch seemed to help but right hand is a burning fire this morning and useless.
    I am sure I will crap about errors but they have no idea what this is like. I also have fibro which doesn't help.
    I am glad I found your blog, since I was curious about tagament.
    Keep blogging.

    ReplyDelete
  2. Dealing with Shingles #4, 2 on left upper and 2 on right upper. None presented with rashes. I will say that the left side was very minor pain and no one could ever really fully diagnose.The first one on right side landed me in ER for what my primary thought may be Gallbladder. ER trip was a complete waste. Next stop was mammogram of right breast, nothing(thankfully!). This so far is a 2 week ordeal and I am in serious pain! Finally my primary said Shingles and a light bulb went off however its too late for antivirals to do any good. She sent me to a neuro who gave me Gabapentin and a strong dose of steroids.. After week 6 I finally started to feel better. Now, 6 months later it's back! All of this to tell you that this is the most informative website I have found. Thank you.
    I'm terrified that this will never end. I am definitely a myth buster @ age 37, otherwise healthy, and never a rash of any sort but the pain is remarkable. Nigh time is the worst!!! I started Tagamet today so we'll see. If I could get my hands on that medical marijuana I would in a heartbeat!
    Thanks so much for all your info and I hope that your battle is over!

    ReplyDelete
  3. i want to use this mean to thank dr.abebu for he good work i was diagnosed with shingles, with the help of dr.abegbu i was able to be cured and healed in 5days with he herbal medicine i was having the sickness for 4month before i found out about dr.abegbu who help me out with his cure, and it work according to his words and i was truly cured in that 5days he said, i am very happy today to share his good news if you need his help you can reach him now through dr.abegbuhealer@gmail.com

    ReplyDelete
  4. 4th time with shingles, had long period of horrid headaches-thought I had Lyme, ct was done, apparently showed something in mastoid-then I got shingles in ear and jaws, inside mouth...now I think it was shingles picked up on ct scan...they want to do an mri...we'll see-headaches still horrid-oh well

    ReplyDelete