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I've had yearly bouts of the same set of symptoms for over thirty years that no one has been able to figure out. It starts off with an extremely stiff neck which prevents me from moving my head, and until a year ago was always on the right side. Often I will get a bad cold as well, which has several times become pneumonia. (I had my first bout of viral pneumonia at age nine, in both lungs)
For years I would wake up with intense pain in my right ear and would often notice that the ear had been weeping while I slept, as there was a dried crust around the outer ear canal in the morning. Although I don't experience the pain any longer, there is a constant ringing in my ears now, and everything I eat and drink tastes of salt, even my own saliva. My right cheekbone and portions of face experience intermittent numbness.
Over the years my problems have increased, working their way downward. I had diarrhoea for several years, and the frequency with which I urinate is ridiculous - during a bout I can void a very full bladder every ten - fifteen minutes.
Last year, during a bout, I noticed several bumps on the back of my shoulder which were slightly itchy. I went to an after-hours clinic and was told that I had shingles. A couple of days later the bumps popped up on my hand and then on my face, very close to my eye. These didn't have red heads on them, as the ones on my shoulder did, but I was alarmed at their proximity to my eye, so I returned to the clinic - this was on a weekend. There was no pain, except for a hot shock that travelled up my finger, which I'd felt before in my neck and a front incisor, during these bouts. I realized then that there was a possibility that what I'd been going through had been repetitive bouts of shingles, without the rash.
A couple of months ago I began with another bout - stiff neck, a bad cold and many bumps coming up in various locations. I went to see my family doctor, who sent me for blood tests, but refusing to entertain the possibility of shingles, as the bumps don't have red heads on them as classic shingles blisters do. My antibody count was very high but he has decided that because recurrent shingles is very rare that I can' t possibly have it and became so infuriated when I persisted in being tested for it that he told me to find another doctor. I've researched this on the Mayo Clinic website, and every single problem that I've had to seek medical attention for is a complication associated with shingles. I'm otherwise exceptionally healthy and am not given to imagining that I'm ill. Please give me your honest opinion - do you think the possibility exists that I have been experiencing bouts of recurrent shingles?
I'm at a loss - how do I get a proper diagnosis?
Shingles only reoccurs in less than 5% of folks who ever get a case of shingles ( which is of course a reactivation of the chicken pox virus ). It's almost impossible to get recurrences as often as you describe. It's incredibly doubtful that this is shingles going on repeatedly ( you'd certainly be one for the record books ).
I encourage you to continue following up with your providers and certainly a neurologist should be on your list of regular follow up too. Also if you haven't seen a rheumatologist yet they should be consulted too. I should also hope you've been followed up by ENT specialists for the ear issues too if not they should definitely be on your list.
Thanks for your input, Grace. I've read how rare recurrent shingles is. I've also read about rare cases that have begun in childhood - I had my first bout of viral pneumonia at age 9 and have had it several times since, with no apparent reason. It's also rare for it to present bilaterally, but since last year the symptoms have begun on the left side of my body where they'd always been localized to the right. It's also rare for the blisters to be painless, but mine merely itched slightly, and were diagnosed by two doctors as shingles. It may be that it's not as rare as is thought - it may be that it's rarely diagnosed correctly.
Unfortunately I'm not likely to find out one way or another. It's impossible to find a family doctor in Canada, and when you do they're so disgruntled about their patient loads that they're generally mean to their patients and entirely unwilling to work with them. If they can't write a quick prescription for something they don't want to talk to you. I've yet to hear of a doctor who understands the concept of working with his/her patient. I'm afraid this won't go any farther, as I'm not able to pursue this any longer. I don't have the will - they've worn me down. They win. I've contended with this mysterious condition for most of life and I've lost faith in Canadian doctors - I'll likely go deaf eventually but quite frankly the quiet might be nice.
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