Hospitalized! Wifey has rare syndrome! (Kind of long)

Miscellaneous and Personal Stuff I Must Share
1

We’ve been on a long and winding medical journey the last few weeks . . .

A few weeks ago Dear Wifey (DW) and I had a short bout of tummy flu. I felt better in a few days, but she kept feeling weaker and weaker. After two weeks of feeling cruddy, she went to our GP, who diagnosed it as a probable Epstein-Barr/bout of mild mono.

DW, by this time, was in a lot of pain from massive body aches and awful back pain and talked the doc into prescribing Tylenol 3 (woohoo! 8 of 'em!).

DW continued to go downhill and was in immense pain and had weird tingling sensations up and down her legs, so we went to the ER last Friday. They took blood, urine, and did a lumbar-area x-ray. Diagnosis: no evidence of back injury, leukocytes a bit elevated – sorry, but no painkillers for you! Go home and wash down Motrins with Gatorade.

I was pissed off because I felt as if DW – who is a real stalwart and in great physical shape – wasn’t being taken very seriously and (perhaps) was thought to be a drug seeker who was wasting medical resources. OTOH, “if you hear hoofbeats think horses, not zebras” is the pithy explanation.

And . . . back to our GP on Wednesday. By this time, DW was in a LOT of pain, had the weird tingles throughout her body and was beginning to walk oddly (like a cross between horse clopping and duck walking). GP refers us to orthopedist for lower back pain and possible sciatica.

By Wednesday night my sweetie couldn’t go up our stairs at all and was now weaving around like a drunk. The tingly feeling has moved into her groin and arms and she’s in immense pain.

Thursday morning we go to the orthopedist. Ortho guy: “Uh, uh, this isn’t a back issue . . . you need to see a neurologist immediately.”

Oh, shit. Sleepless night, then at neuro at 9am this morning. DW staggers into the office and the doc, who is a wonderful guy I’ve seen before for a seizure disorder, does a few reflex taps, excuses himself and comes back with a colleague. More tapping, then: “You have no nerve reflexes below the waist” :eek::eek: They pull in an EMG machine and confirm that nerve signals (“F Waves”) are non-existent.

“Hmmm, we’re calling an ambulance and admitting you to the hospital immediately!”

So, DX is the rare Guillain-Barre Syndrome. Sweetie is on a Dialudid drip, they are pushing Heparin, and immunoglobulin platelet transfusions begin tonight or tomorrow. Thankfully, CAT scan and other tests are negative (I was worried it was a stroke, brain tumor, or MS – though I guess MS can’t be conclusively ruled out). Thus far, nerve paralysis has not caused breathing/heart problems, which is a good sign that this may be recoverable.

Please send good thoughts our way :slight_smile:

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Whew, good luck to her and you too! Glad they finally got around to a diagnosis.

Can you (or any docs) say how the tummy flu could have been related to this? Was it coincidence?

Very surprised no one sent you to a neurologist earlier. Tingling isn’t nothing! I had an issue when I was a teenager that was waved off by a GP a few times then an optometrist was the one who sent me straight to a neurologist toute suite.

Hopefully her answers and recovery are swift!

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Hope your wife is on a fast track to recovery, my friend. One question? Did your wife have any sort of innoculation/vaccine in the last few weeks or months?

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Fuck those assholes that didn’t take her seriously! I’m sorry she had to suffer but thank goodness she’s getting care now.

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Theories (and because this is a syndrome, not everything is clear cut) are that stuff like campyoblacter(sp) can proceed from causing tummy flu to attacking the myelin sheaths of nerve coverings. Epstein-Barr, which practically everyone and their dog has, can also participate.

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She had a tetanus shot in July. I dunno if tetanus is on the list of vaccination suspects.

Thanks for your kind wishes.

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Yeah! Buttholes . . . :smiley:

Update: Neuro just made rounds and Wifette will be in the hospital for six days. Each hemoglobulin treatment takes about six hours, they plan on doing one each day. She’s enjoying the Dialudid verrrrrry much :cool:

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I’m glad they (finally) found what it is and hope she recovers soon. take care of yourself, too!

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You know, it’s illnesses like this that make me glad I live in the here and now, and not in “the good old days” DW’s illness would have no treatment. Thank God for medical research and modern medicine.

Jennshark, keep us posted on how your wife is doing. We will keep her in our thoughts and prayers.

I remember the one time I had Demerol in the hospital. “Pain? What pain?” I felt like I was floating an inch above the bed, and I realized why people can get addicted to meds. The simple lack of pain feels so good.

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Guillain-Barre syndrome is a diagnosis of exclusion, meaning they’ve ruled out X, Y, and Z, and L, M, N, O, and P too, but it does have an excellent prognosis with appropriate supportive treatment. It is a rare sequela viral infections.

Hope she recovers quickly.

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May she be back enjoying your own home quickly.

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Indeed. And while she’s high on pain mess, that’d be a good time to tell her what you did to her Jeep.

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Oh, yeah. I had Dialudid in the ER once – what torn ankle ligaments?/I loooove everyone! Really did clarify why folks get addicted.

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They’re 90-95% sure it’s Guillain’s; nerve paralysis ascended to hands, but – thank all that is good – no cardio-lung involvement (fingers crossed).

I have, of course, been reading everything I can about GBS. It’s a rare, weird syndrome.

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Thank you for the great laugh! :D:D:D The good news is that all the electronics work; the carpet is still damp, but it’s so humid here I won’t be able to get it usefully shampooed 'til it cools down.

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Just to show you I watch too many medical shows, your OP sounded like you both got botulism!

Hope she’s getting better.

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I read waaaay too many “medical mystery” books. I already had her diagnosed with Zika, MS, malaria, Legionnaire’s Disease, TIA, yellow fever, cholera . . . :smiley:

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That’s a scary disease, but most people recover fully. Good luck.

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Prayers for your wife’s recovery. FWIW, one of my gym friends had that syndrome, and I have spotted him squatting 275 for reps. So it can be a full recovery.

Regards,
Shodan

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My Dad had it, he contracted it in WWII, in the South Pacific. He said it started as flu or food poisoning (he couldn’t really remember which) and just kept getting worse. He was hospitalized for a long time, but this was the '40s so treatments were a good deal different. In the end it left him with some lower leg atrophy, and a propensity to breaking lower leg and foot bones. He was plenty active though up through his late 60s, skiing and riding horses and fly fishing on trout streams, also doing things like big-time gardening, cutting trees and chopping the wood for the fireplace. He did end up using a walking stick, but some of his problems were because he was too damned pigheaded to do the exercises set for him. His hospital time and treatment left him with a distaste for the medical profession and he was apt to blow off much of what he was told to do.

At any rate, other than that he was healthy, and lived a very full 88 years.

I hope your Wifey is on the mend!