# Help! Undiagnosed medical problem is getting worse.  I don't know where to turn.

**URL:** <https://boards.straightdope.com/t/help-undiagnosed-medical-problem-is-getting-worse-i-dont-know-where-to-turn/741441>\
**Category:** In My Humble Opinion\
**Created:** [December 27, 2015, 1:33am UTC](https://boards.straightdope.com/t/help-undiagnosed-medical-problem-is-getting-worse-i-dont-know-where-to-turn/741441 "2015-12-27T01:33:10Z")\
**Posts on this page:** 20\
**Page:** 4

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**Author:** ![DSeid](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/dseid/32/20194_2.png) [@DSeid](https://boards.straightdope.com/u/DSeid)\
**Post date:** [January 2, 2016, 5:35pm UTC](https://boards.straightdope.com/t/help-undiagnosed-medical-problem-is-getting-worse-i-dont-know-where-to-turn/741441/61 "2016-01-02T17:35:16Z")

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Apparently optic neuritis _is_ [a reported presentation](https://www.jstage.jst.go.jp/article/internalmedicine/47/17/47_17_1539/_pdf) in Guillain-Barre and its variants. That case report in a 49 year old male following Ebstein Barr Virus infection (best known as the cause of mono) and [this one](https://www.karger.com/Article/Pdf/113177) following a nonspecific infection in a 31 year old woman. The optic nerve is part of the central nervous system and textbook is (dang diseases that don’t study the textbooks!) for Guillain-Barre Syndrome to be an ascending peripheral neuropathy mostly of motor neurons, classically showing up as an ascending flaccid paralysis with the biggest worry about it getting up to the cervical nerves that control the diaphragm (the main breathing muscle) which follows some presumptively viral infection. Hence the need to be in an ICU setting where breathing support is possible quickly if needed. The prospects for recovery are very good in the condition. **Wesley** , there is no single test that confirms GBS, but it is thought to be the result of the body reacting to the minor infection with antibodies that attack parts of certain neurons. It is again crossing other things off the list and a clinical pattern, which includes the worsening plateauing and then improvement beginning. Hoping that if this is what he has that the improvement phase comes soon, fast and complete!

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**Author:** ![Blue\_Blistering\_Barnacle](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/blue_blistering_barnacle/32/3386_2.png) [@Blue\_Blistering\_Barnacle](https://boards.straightdope.com/u/Blue_Blistering_Barnacle)\
**Post date:** [January 2, 2016, 9:46pm UTC](https://boards.straightdope.com/t/help-undiagnosed-medical-problem-is-getting-worse-i-dont-know-where-to-turn/741441/62 "2016-01-02T21:46:35Z")

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Here’s hoping for successful treatment and resolution.

There were lots of good proposals in the thread- I was going to chime in with Subacute Combined Degeneration (SCD) of the spinal cord (often due to B-12 deficiency), but by then TW had reported unspecified autoimmune, possibly G-B, as cause.

> **[Subacute combined degeneration of spinal cord](https://en.wikipedia.org/wiki/Subacute_combined_degeneration_of_spinal_cord)**
>
> Subacute combined degeneration of spinal cord, also known as myelosis funiculus, or funicular myelosis, also Lichtheim's disease, and Putnam-Dana syndrome, refers to degeneration of the posterior and lateral columns of the spinal cord as a result of vitamin B12 deficiency (most common), vitamin E deficiency, and copper deficiency. It is usually associated with pernicious anemia.
> The onset is gradual and uniform. The pathological findings of subacute combined degeneration consist of patchy losse...

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**Author:** ![Qadgop\_the\_Mercotan](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/qadgop_the_mercotan/32/83_2.png) [@Qadgop\_the\_Mercotan](https://boards.straightdope.com/u/Qadgop_the_Mercotan)\
**Post date:** [January 2, 2016, 11:07pm UTC](https://boards.straightdope.com/t/help-undiagnosed-medical-problem-is-getting-worse-i-dont-know-where-to-turn/741441/63 "2016-01-02T23:07:27Z")

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Get well, **Two Wheels**!

There’s so much about disease that we just don’t recognize, understand, or know yet, despite all the training, experience, and advanced technology we have.

But we can do a lot more than we used to be able to.

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**Author:** ![nearwildheaven](https://avatars.discourse-cdn.com/v4/letter/n/90db22/32.png) [@nearwildheaven](https://boards.straightdope.com/u/nearwildheaven)\
**Post date:** [January 2, 2016, 11:13pm UTC](https://boards.straightdope.com/t/help-undiagnosed-medical-problem-is-getting-worse-i-dont-know-where-to-turn/741441/64 "2016-01-02T23:13:52Z")

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Two Wheels, I’m glad you’re in the hospital and they’re kinda sorta figuring out what’s wrong with you.

Keep us posted! 🙂

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**Author:** ![AngelSoft](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/angelsoft/32/440_2.png) [@AngelSoft](https://boards.straightdope.com/u/AngelSoft)\
**Post date:** [January 6, 2016, 12:52am UTC](https://boards.straightdope.com/t/help-undiagnosed-medical-problem-is-getting-worse-i-dont-know-where-to-turn/741441/65 "2016-01-06T00:52:16Z")

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☹ I’m a bit worried the thread hasn’t been updated. I was thinking about it today and found it untouched for 3 days. **Two Wheels** I hope something positive or reassuring has come up for you.

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**Author:** ![bobkitty](https://avatars.discourse-cdn.com/v4/letter/b/c67d28/32.png) [@bobkitty](https://boards.straightdope.com/u/bobkitty)\
**Post date:** [January 6, 2016, 1:06am UTC](https://boards.straightdope.com/t/help-undiagnosed-medical-problem-is-getting-worse-i-dont-know-where-to-turn/741441/66 "2016-01-06T01:06:27Z")

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Last activity on the boards was the morning of 1/2. Hopefully he’s just resting and regaining his strength, and will be back online soon.

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**Author:** ![DSeid](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/dseid/32/20194_2.png) [@DSeid](https://boards.straightdope.com/u/DSeid)\
**Post date:** [January 6, 2016, 1:26am UTC](https://boards.straightdope.com/t/help-undiagnosed-medical-problem-is-getting-worse-i-dont-know-where-to-turn/741441/67 "2016-01-06T01:26:07Z")

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Well _if_ it is indeed a variant of GBS and it was moving up to his hands then diaphragm was next … he could be on a ventilator right now. If that is what it going on then it could be a while at that plateau phase before he hits the improvement side of the curve - apparently 2 to 6 weeks of ventilator support is not uncommon if someone is in the group that needs it.

We have every reason to expect that he will recover well and be back posting on these boards but it might be a while.

If reading this Two Wheels hang in there through what can be a very difficult time both for you and for your family and know that we are thinking of you and hoping for a speedy recovery process.

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**Author:** ![gigi](https://avatars.discourse-cdn.com/v4/letter/g/a587f6/32.png) [@gigi](https://boards.straightdope.com/u/gigi)\
**Post date:** [January 6, 2016, 4:48am UTC](https://boards.straightdope.com/t/help-undiagnosed-medical-problem-is-getting-worse-i-dont-know-where-to-turn/741441/68 "2016-01-06T04:48:20Z")

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How scary for you and your family. I hope that the treatment will help and a diagnosis is made.

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**Author:** ![SeaDragonTattoo](https://avatars.discourse-cdn.com/v4/letter/s/df705f/32.png) [@SeaDragonTattoo](https://boards.straightdope.com/u/SeaDragonTattoo)\
**Post date:** [January 6, 2016, 5:56am UTC](https://boards.straightdope.com/t/help-undiagnosed-medical-problem-is-getting-worse-i-dont-know-where-to-turn/741441/69 "2016-01-06T05:56:57Z")

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Here’s to hoping **Two Wheels** is just in recovery and maybe still inconvenient/painful to post but on the way to mending.

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**Author:** ![KarlGauss](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/karlgauss/32/3713_2.png) [@KarlGauss](https://boards.straightdope.com/u/KarlGauss)\
**Post date:** [January 6, 2016, 3:18pm UTC](https://boards.straightdope.com/t/help-undiagnosed-medical-problem-is-getting-worse-i-dont-know-where-to-turn/741441/70 "2016-01-06T15:18:04Z")

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**sweat209** : By any chance, do you know a fellow named **peace**? Well, whether you do or don’t, ‘ **peace** be upon you’ (and maybe even in you).

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**Author:** ![Really\_Not\_All\_That\_Bright](https://avatars.discourse-cdn.com/v4/letter/r/e8c25b/32.png) [@Really\_Not\_All\_That\_Bright](https://boards.straightdope.com/u/Really_Not_All_That_Bright)\
**Post date:** [January 6, 2016, 10:09pm UTC](https://boards.straightdope.com/t/help-undiagnosed-medical-problem-is-getting-worse-i-dont-know-where-to-turn/741441/71 "2016-01-06T22:09:45Z")

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Posting to subscribe. Good vibes sent your way, **Two Wheels**.

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**Author:** ![sweat209](https://avatars.discourse-cdn.com/v4/letter/s/9fc348/32.png) [@sweat209](https://boards.straightdope.com/u/sweat209)\
**Post date:** [January 9, 2016, 3:15am UTC](https://boards.straightdope.com/t/help-undiagnosed-medical-problem-is-getting-worse-i-dont-know-where-to-turn/741441/72 "2016-01-09T03:15:40Z")

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> [@USCDiver](#):
>
> Did you read the thread? She’s at a University Hospital in the ICU. She’s undoubtedly got a large team of doctors.

So the OP has a team of doctors now?

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**Author:** ![SeaDragonTattoo](https://avatars.discourse-cdn.com/v4/letter/s/df705f/32.png) [@SeaDragonTattoo](https://boards.straightdope.com/u/SeaDragonTattoo)\
**Post date:** [January 9, 2016, 10:40am UTC](https://boards.straightdope.com/t/help-undiagnosed-medical-problem-is-getting-worse-i-dont-know-where-to-turn/741441/73 "2016-01-09T10:40:34Z")

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> [@sweat209](#):
>
> So the OP has a team of doctors now?

Yes. Post 42. Thanks for reading.

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**Author:** ![Qadgop\_the\_Mercotan](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/qadgop_the_mercotan/32/83_2.png) [@Qadgop\_the\_Mercotan](https://boards.straightdope.com/u/Qadgop_the_Mercotan)\
**Post date:** [January 9, 2016, 4:55pm UTC](https://boards.straightdope.com/t/help-undiagnosed-medical-problem-is-getting-worse-i-dont-know-where-to-turn/741441/74 "2016-01-09T16:55:12Z")

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The OP hasn’t been on SDMB since January 2nd. That length of time offline is not surprising at all, if it is GBS. But it’s a pity the only way we have of checking up on OP is via online presence or not. ☹

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**Author:** ![incidental](https://avatars.discourse-cdn.com/v4/letter/i/22d042/32.png) [@incidental](https://boards.straightdope.com/u/incidental)\
**Post date:** [January 11, 2016, 4:24am UTC](https://boards.straightdope.com/t/help-undiagnosed-medical-problem-is-getting-worse-i-dont-know-where-to-turn/741441/75 "2016-01-11T04:24:10Z")

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> [@sweat209](#):
>
> You really should see other specialist. I would not have the nicest of only dealing with one specialist going on days and days and no diagnosis.
> 
> What are you in some small town or small city? Some thing does not sound right.
> 
> Did the specialist consult with other specialists?
> 
> If you have some mad HMO heath plan may explain why this going weeks now and no diagnosis.

I’d just like to add that the more exotic the diagnostic test, the more likely it is to be sent out to an external specialty lab. Even at large University hospitals, things get sent out regularly to large reference labs, and these results can take time to return. Usually, you’ll just treat empirically as if it is auto-immune, as the benefits outweigh the risks.

Best wishes to the OP. Finger’s crossed it’s not autoimmune secondary to a more serious issue.

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**Author:** ![DSeid](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/dseid/32/20194_2.png) [@DSeid](https://boards.straightdope.com/u/DSeid)\
**Post date:** [January 15, 2016, 2:00pm UTC](https://boards.straightdope.com/t/help-undiagnosed-medical-problem-is-getting-worse-i-dont-know-where-to-turn/741441/76 "2016-01-15T14:00:32Z")

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Just bumping in case **Two Wheels** is able to read but not post (which would admittedly be early if what was going on was a GBS variant that got to vent status), to let him know that we are thinking of him. Hope you _are_ recovering by now and doing well and when you are able to post again please do.

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**Author:** ![Happy\_Fun\_Ball](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/happy_fun_ball/32/17664_2.png) [@Happy\_Fun\_Ball](https://boards.straightdope.com/u/Happy_Fun_Ball)\
**Post date:** [January 21, 2016, 7:50pm UTC](https://boards.straightdope.com/t/help-undiagnosed-medical-problem-is-getting-worse-i-dont-know-where-to-turn/741441/77 "2016-01-21T19:50:05Z")

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I feel the need to bump this thread again. I am worried about you \*\*Two Wheels \*\*and I hope you are OK.

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**Author:** ![Mama\_Zappa](https://avatars.discourse-cdn.com/v4/letter/m/71e660/32.png) [@Mama\_Zappa](https://boards.straightdope.com/u/Mama_Zappa)\
**Post date:** [January 28, 2016, 1:17am UTC](https://boards.straightdope.com/t/help-undiagnosed-medical-problem-is-getting-worse-i-dont-know-where-to-turn/741441/78 "2016-01-28T01:17:54Z")

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Another bump. He hasn’t posted since January 2nd.

I checked his profile - no contact info there so no way to drop an email.

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**Author:** ![bobkitty](https://avatars.discourse-cdn.com/v4/letter/b/c67d28/32.png) [@bobkitty](https://boards.straightdope.com/u/bobkitty)\
**Post date:** [January 28, 2016, 1:55am UTC](https://boards.straightdope.com/t/help-undiagnosed-medical-problem-is-getting-worse-i-dont-know-where-to-turn/741441/79 "2016-01-28T01:55:30Z")

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Is this one of those times we gently petition the mods to open the super-secret vault o’info and reach out to him? Or is that totally verboten?

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**Author:** ![ivylass](https://avatars.discourse-cdn.com/v4/letter/i/9de053/32.png) [@ivylass](https://boards.straightdope.com/u/ivylass)\
**Post date:** [January 28, 2016, 2:16am UTC](https://boards.straightdope.com/t/help-undiagnosed-medical-problem-is-getting-worse-i-dont-know-where-to-turn/741441/80 "2016-01-28T02:16:08Z")

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It couldn’t hurt to ask.

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