Ho-hum...another Day, another Dr., another Dx (continued)

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Ho-hum...another Day, another Dr., another Dx (continued)

Postby euphoniaa » Sat Jul 21, 2012 2:38 pm

(New thread update! 3-3-13)

(Thread updated 10-21-12)

It's pneumonia this time - my very first bout with it! My life is so absurb that it continues to hit me with one dx after another - almost all of them totally unrelated to MS, of course. I can only assume it's "aspiration pneumonia" due to my (non-MS related) hiatal hernia/reflux problem, that often wakes me up choking my most recent meal into my lungs. A couple hours of gagging, coughing & sputtering seems to take care of it, but I've always assumed that, sooner or later, my lungs wouldn't be able to handle the load. Looks like I was right.

(The hiatal hernia story is here: post158180.html?hilit=hiatal#p158180 )

Woke up at 3:00 am this last Monday morn coughing up blood, with no other real symptoms. I actually went on to work, because it had stopped by then, I wasn't that sick, and, hey, this isn't even close to the weirdest or scariest thing I ever woke up with anyway. :smile: The doc dx'd bronchitis due to low grade fever and not many other clues, gave me an antibiotic. I suggested a chest x-ray anyway, he agreed, and there it was - pneumonia!

And then on Friday was the latest trip to the physiatrist for more leg EMGs (on the non-MS one). So Part 2 of this week's Docs & Diagnoses posts will come later. I guess I don't really need sympathy or even advice, (unless you have a magical, non-surgical cure for the hernia), I just always feel the need to share my whines with everyone. :smile:

And you're all welcome to stop into my thread and whine along! Sending good thoughts, good health, good humor, and good lungs to all!
Last edited by euphoniaa on Sun Mar 03, 2013 5:35 pm, edited 4 times in total.
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS or MS symptoms except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Re: Ho-hum...another Day, another Dr., another Diagnosis-Pt

Postby lyndacarol » Sat Jul 21, 2012 3:19 pm

Oh euphoniaa! What dreadful news! PLEASE take care of yourself. I need you here to share with you and bounce ideas off of you. You are in my prayers. Keep us posted about developments.
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Re: Ho-hum...another Day, another Dr., another Diagnosis-Pt

Postby Scott1 » Sat Jul 21, 2012 3:50 pm

Hi Euphoniaa,

Your problems aren't new to me. I had these sorts of issues when I was unwell.

Two questions

a) Do you still have your tonsils
b) Have you ever been tested for Chlamydia Pneunomiae?

Regards
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Re: Ho-hum...another Day, another Dr., another Diagnosis-Pt

Postby euphoniaa » Sun Jul 22, 2012 4:20 am

Thanks, Lyndacarol, I appreciate your concern! This is a whole new thing for me, so I'll update if I learn more.

Scott1 wrote:Hi Euphoniaa,

Your problems aren't new to me. I had these sorts of issues when I was unwell.

Two questions

a) Do you still have your tonsils
b) Have you ever been tested for Chlamydia Pneunomiae?

Regards


And Scott, the quick answers are:
a) No, my tonsils are gone
b) No never tested for that

The long answers (and I always have loooong ones):
a) When I was growing up, most of my colds & sore throats turned into swollen glands in my neck that looked like mumps. However, I never had a dx of mumps or strep throat or anything - just those swollen glands & laryngitis. At college it happened about once a month, even while I roomed with my sister, who was sent home with mono. I was tested several times - no mono either.

Finally, when I was 21, they sent me to have my tonsils out and it all stopped. Since then I generally get one bad cold a year, but last year was an exception, when I went the entire cold season - fall, winter, spring - without a single illness, while my office co-workers were sick as can be. I always get a flu shot and I had the pneumonia vaccine last year also.

b) Next appointment is on Tuesday, but I'm not sure how well the antibiotic is working. There are so many types of pneumonia I don't know why he didn't test for that beforehand. However, I don't think I have many symptoms of Chlamydia Pneunomiae. This started with a little early morning cough on Friday a week ago, and was barely noticeable until a couple of days later. Very low grade fever, rare coughing. I wasn't sick enough to stay home at all, but I left on Wednesday when I finally got word it was pneumonia and I was afraid I was contagious (too late - I had been there all week). For the most part, I only cough a little at night/early morn.

Scott1, what do you mean by "unwell?" Have you had a lot of pneumonia? I figure we're all pretty "unwell" so that could mean anything. :smile:

Well, you guys, thanks for stopping in!
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS or MS symptoms except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Re: Ho-hum...another Day, another Dr., another Diagnosis-Pt

Postby Scott1 » Sun Jul 22, 2012 6:57 am

Hi again,

The reason I asked is I had a constant problem for years where I would lose my voice, I always felt unwell, I constantly coughed, I had a throat like it was made of steel bands, I would wake up at night gasping for air and I also had hiatus hernia that didn't trouble me as much as yours but I expected to "gurgle" for hours after every meal. Those clever doctors presumed I had a rare form of asthma and prescribed ever stronger medications that did nothing. Ultimately I managed to see an ENT specialist who diagnosed a deviated septum (ie a blocked nose). This meant I was mouthing breathing and drawing unfiltered air across my tonsils which consequently became infected. I ended up with tonsilitis, laryngitis, rhinitis and a pile of other complications. After a septoplasty to straighten my nasal passages I began to nose breath but the tonsils were so rotten I needed a tonsilectomy and later a partial resection of the soft palate as the tissue was so engorged that it would rest on the back of my tongue. You wouldn't wish that combination of procedures on your worst enemy at the age of 40 when I was done.
I wish the tonsils had been biopsied to see what they were full of as I recall the surgeon saying how rotten they were.

Later I discovered I had chlamydia pneumoniae (walking pneunomia) which was treated but my neck still felt like it was made of steel bands until I started agressively treating my EBV infection.
I don't know why but gradually my hiatus hernia problems went away. The hernia is a physical thing so there shouldn't be a connection but it doesn't trouble me at all now. I don't eat many grains and prefer meat, vegetables or salads and only have a small amount of yoghurt as the dairy intake.
I also do Pilates at quite an advanced level and I think stretching of my torso helps as well.

My MS is well under control following the approach I've detailed under my other posts but I'm suspicious that all the issues are connected in some way.
Maybe you could check for the bug.
Good luck.
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Re: Ho-hum...another Day, another Dr., another Diagnosis-Pt

Postby euphoniaa » Tue Jul 24, 2012 6:06 am

Scott1 wrote:Hi again,

The reason I asked is I had a constant problem for years where I would lose my voice, I always felt unwell, I constantly coughed, I had a throat like it was made of steel bands, I would wake up at night gasping for air and I also had hiatus hernia that didn't trouble me as much as yours but I expected to "gurgle" for hours after every meal. Those clever doctors presumed I had a rare form of asthma and prescribed ever stronger medications that did nothing. Ultimately I managed to see an ENT specialist who diagnosed a deviated septum (ie a blocked nose). This meant I was mouthing breathing and drawing unfiltered air across my tonsils which consequently became infected. I ended up with tonsilitis, laryngitis, rhinitis and a pile of other complications. After a septoplasty to straighten my nasal passages I began to nose breath but the tonsils were so rotten I needed a tonsilectomy and later a partial resection of the soft palate as the tissue was so engorged that it would rest on the back of my tongue. You wouldn't wish that combination of procedures on your worst enemy at the age of 40 when I was done.
I wish the tonsils had been biopsied to see what they were full of as I recall the surgeon saying how rotten they were.

Later I discovered I had chlamydia pneumoniae (walking pneunomia) which was treated but my neck still felt like it was made of steel bands until I started agressively treating my EBV infection.
I don't know why but gradually my hiatus hernia problems went away. The hernia is a physical thing so there shouldn't be a connection but it doesn't trouble me at all now. I don't eat many grains and prefer meat, vegetables or salads and only have a small amount of yoghurt as the dairy intake.
I also do Pilates at quite an advanced level and I think stretching of my torso helps as well.

My MS is well under control following the approach I've detailed under my other posts but I'm suspicious that all the issues are connected in some way.
Maybe you could check for the bug.
Good luck.

Yikes, Scott! That story is horrifying! Glad you've found a few things that work for you. It's reassuring that your hiatal hernia improved so much also. I know that diet and exercise have helped me for many years in all symptoms and from all medical conditions, and I'm constantly adapting my approach to new challenges. The hernia has caused me to give up spicy foods & carbonated drinks altogether, but it still isn't a cure for that non-MS physical defect. :sad:

I'm anxious to see what they say at my followup doctor's appointment today. Since I wrote this thread on Saturday, I've had temperature spikes (higher than before) and many nighttime coughing jags (worse than before). Maybe that will cause him to actually test for the bug that bit me. :smile:

More later, I'm sure.
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS or MS symptoms except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Re: Ho-hum...another Day, another Dr., another Diagnosis-Pt

Postby euphoniaa » Tue Jul 31, 2012 4:05 pm

euphoniaa wrote:
I'm anxious to see what they say at my followup doctor's appointment today. Since I wrote this thread on Saturday, I've had temperature spikes (higher than before) and many nighttime coughing jags (worse than before). Maybe that will cause him to actually test for the bug that bit me. :smile:

More later, I'm sure.


Update 7-31-12: Well, I staggered into the ER last Friday afternoon with pain spasms gasping, "Heh..heh...help!" and spent the next few days in the hospital, released at noon today. Finally made an amazing recovery starting yesterday evening (after receiving double IVs of antibiotics, pulmonary therapy, etc.).

Had doctors & tech people swarming around with scary looks, hauling me to test after test, including a CT scan that revealed creepy-looking stuff in my pneumonia lung and now a spot on my thyroid (Ho-hum, another day, another doctor, another diagnosis...) . Lots of blood tests & cultures for "the bug that bit me" (early investigation yielded consensus of aspiration pneumonia, as I suspected). Lots of followup appts coming.

I actually feel fine today - close to normal! Or at least what passes for normal in my absurd little life. :smile: Also amazing that these wild episodes never seem to specifically affect my MS at all, just feel like it's the usual recovery anyone would have from severe pneumonia. Had a great night's sleep last night, woke at my usual 5:00 am and did a modified version of my morning exercises in my room - I'm trying to regain my strength and loosen up muscles stiffened by crappy, uncomfortable, hospital bed from hell.

But I'm so glad I got sprung today! Hospital stay was starting to totally piss me off - until last night's bounce back from the brink. One morning text to my sister went something like this: "Good News/Bad News: Breakfast omelet delicious! But breakfast knife too dull to slit my wrists."

There's MUCH more, but I've got tons to do at home - may not have time to reply right away.

Wishing good health and good, deep, pain-free breaths to all!
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS or MS symptoms except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Re: Ho-hum...another Day, another Dr., another Diagnosis-Pt

Postby MarkLavelle » Tue Jul 31, 2012 4:25 pm

euphoniaa,

I've known for years that my purpose in life is to keep doctors busy but obviously I've been slacking, compared to you!

Take a week off, already, will ya? :wink:

Stay as well as possible,
Mark

RRMS dx 3/3/11; Copaxone since 12/1/11
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Re: Ho-hum...another Day, another Dr., another Diagnosis-Pt

Postby bartman » Tue Jul 31, 2012 6:13 pm

I'm sure you know about this website www.CPn Help.org. But you should also be tested for Lyme, mycoplasma pn, bartonella and babesia...these infections are being found in MS patients alot!!
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Re: Ho-hum...another Day, another Dr., another Diagnosis-Pt

Postby NHE » Wed Aug 01, 2012 12:43 am

Hi Euphoniaa,
It's great to hear that your starting to get better! :-D

NHE
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Re: Ho-hum...another Day, another Dr., another Diagnosis-Pt

Postby euphoniaa » Thu Aug 02, 2012 6:52 am

Thanks for your encouragement - I'm doing very well this week! In fact, some MS symptoms are even better than before the hospital stay. :smile: I even plan to go in to work for awhile this afternoon.

Mark, I'd love to follow your sage advice, but I have my physiatrist appointment tonight, with the results of last Thursdays C-spine & Lumbar MRIs. Stay tuned...
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS or MS symptoms except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Re: Ho-hum...another Day, another Dr., another Diagnosis-Pt

Postby euphoniaa » Sun Aug 05, 2012 3:52 am

Aw hell, I just woke up and suddenly I'm coughing up disgusting, scary-looking stuff after a couple days of no coughing at all. Only 2 more days of antibiotics.
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS or MS symptoms except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Re: Ho-hum...another Day, another Dr., another Diagnosis-Pt

Postby euphoniaa » Sun Oct 21, 2012 8:01 am

euphoniaa wrote:Aw hell, I just woke up and suddenly I'm coughing up disgusting, scary-looking stuff after a couple days of no coughing at all. Only 2 more days of antibiotics.


Two jam-packed months later and...the medical saga continues. But at least now, after steering my ownself (brain-damaged as it is) through an ever expanding maze of doctor’s offices, clinics, and testing centers (with contradictory professional advice & very little assistance), I’m finally getting some negative test results! (Mostly.) :smile: After another double round of antibiotics since I last posted above on this thread, PET/CT scans show the ominous pneumonia mass in my lung is finally gone! Kinda. With just traces left. (I posted about my Antibiotic Adventures here: antibiotics-f28/topic20745.html )

I’m feeling pretty good, with little noticeable change to my MS either better or worse (despite weeks of antibiotics and a bombardment of radiation). And…despite the monumental efforts of doctors with visions of dollar signs glinting in their eyes, none have been able to dx me with any of the varieties of cancer they’ve looked for. (So far.) Dr. Gyno Gal scheduled me for a colposcopy & possible biopsy – not needed after all! At last week’s annual dermatologist appointment, Dr. Derma Dude found nothing to biopsy for a change!

My thyroid nodules don’t show cancerous on PET scan either! (I guess the nodules technically give me another NEW dx of “goiter,” but all docs assure me that, “Everyone in our state has thyroid nodules. We’re too far from the ocean.”) THAT story: Last month I was sent to a Cancer Center for a consultation to order the I-131 test for the thyroid nodules. On review of my other issues, the cancer doc could hardly contain his glee at the prospect of a patient with so many potential diseases and so much insurance! (I hear there are 3 new Cancer Centers in town competing for sick people.)

Dr. Cancer Guy spent an hour trying to sell me on the idea of possible LUNG CANCER instead of (or along with) thyroid cancer, seeming surprised at my basic "ho-hum" shrug at his efforts to leave me cowering in the corner, begging for his help. (If I only had a $1 for every time he yelled “lung cancer” at me…) Somehow he convinced my insurance company to approve a whole body PET scan – for 3 days later – even though I was still coughing my guts up from pneumonia. At the advice of the pleasant Pulmonary People at the next day’s appointment, I pushed the PET ahead 3 weeks to let the new antibiotics clear my lungs enough to prevent a false lung cancer reading.

The full PET/CT scan showed no obvious cancer anywhere, although all my scans do show the thyroid nodules & the major hiatal hernia, etc., etc. I keep reminding my docs that, geez, at my age, pics of my insides won’t look any younger or healthier than pics of my outsides do… :smile:

A surgeon still did a biopsy of my thyroid last week, just in case, and will do an endoscopy this Wed. in preparation for possible hiatal hernia surgery. The hiatal hernia/reflux has been acknowledged as the sole cause of my aspiration pneumonia, and I’ve pointed out many times that it’s caused much more distress in my life than MS ever has. I just choked yet another meal into my lungs on Monday night.

And my current distress is mainly from my bodyful of arthritis, since I’m forbidden to take any anti-inflammatory meds like aspirin or ibuprofen for a week until the endoscopy on Wed. I’m even hobbling around today with my right, non-MS knee wrapped to reduce swelling and pain. Sigh. It’s not always MS, it’s not always MS, it’s not always MS...

So, in the last 3-1/2 months – and almost totally unrelated to MS -- I’ve had:

Many chest X-rays, 4 days in the hospital, lots of blood work, 1 leg X-ray (on my non-MS leg), EMGs (on the non-MS leg), 2 spinal MRIs, 2 CT scans of my lungs, 1 whole body PET/CT scan, 1 colposcopy (don’t ask…you don’t want one), 2 ultrasounds & a biopsy of my thyroid.

And I’ve been to all these docs (TOTALLY unrelated to MS): Primary M.D., Pulmonary People, Physiatrist/Rehab Doc, Gynecologist, Oncologist, Dermatologist, Surgeon – most of them more than once.

I’m still working full-time (when I’m not at doctors’ appointments), exercising daily, and hanging in there with my MS slooooowly progressing as usual (I'm a little more dependent on my cane), and no obvious effects on it whatsoever from the recent ordeal(s). I always assume that comes from having Old MS instead of New MS. :smile:

Wishing good health, good doctors, good moods, and good days to all of you! :smile:
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS or MS symptoms except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Re: Ho-hum...another Day, another Dr., another Dx (continued

Postby lyndacarol » Sun Oct 21, 2012 12:22 pm

Euphoniaa – What an ordeal!

For your viewing pleasure (and if you have time to kill… in the hospital or in a waiting room) I am offering you this information on a brand-new condition that maybe you and your doctors need to consider!!! One more!

For part one of the video taken from the TV program (you can click on part 2 and 3 under the picture): http://www.doctoroz.com/videos/silent-r ... demic-pt-1

For the article (transcript information): http://www.doctoroz.com/videos/silent-reflux-epidemic

For the three-step prevention program: http://www.doctoroz.com/videos/3-step-s ... ntion-plan

The recommendation for an elevated head of the bed made by someone here (at the moment I can't recall the name) might have merit in view of this Silent Reflux. I haven't done anything to my bed, but I am looking for a wedge-shaped pillow. Maybe one would help you with your traces of pneumonia? Hiatal hernia/reflux?

You are certainly in my thoughts and prayers; please get well soon. We need your attention and comments here.
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Re: Ho-hum...another Day, another Dr., another Dx (continued

Postby euphoniaa » Mon Oct 22, 2012 5:34 am

lyndacarol wrote:The recommendation for an elevated head of the bed made by someone here (at the moment I can't recall the name) might have merit in view of this Silent Reflux. I haven't done anything to my bed, but I am looking for a wedge-shaped pillow. Maybe one would help you with your traces of pneumonia? Hiatal hernia/reflux?

You are certainly in my thoughts and prayers; please get well soon. We need your attention and comments here.


Thanks for you good thoughts, lyndacarol! I know I've still got a lot to go through.

As for the "Silent" Reflux issue, I checked out those links the other day, and I'm WAY beyond Silent Reflux and have progressed to SUPER REFLUX, due to developing the hiatal hernia, which leaves my esophagus pretty much open. You must have missed some of my earlier whines about it. :-D It's likely that I had "silent reflux" years ago, but now it's really, really loud! In fact, I've already made all the dietary adjustments & eliminations over the years, but nowadays, even a glass of water will gurgle back up - while I'm standing up in the daytime. 8O Like right this minute...

One of the early, obvious signs was when I was taking fish oil caps for awhile (years ago - I've posted about it) and developed such wild, painful, nighttime spasms in my throat that I checked out a book about esophageal cancer at the library. And then I decided to drop the fish oil and suddenly the spasms disappeared!

I've been sleeping propped up several inches for a few years, although until recently it was with pillows that sometimes slid down. The recommended course of action for Reflux (by my doctor) is to raise the head of one's bed, but that's not a viable option for me. Pillows & wedges are not supposed to work as well for Reflux, but I ordered a giant foam wedge after the pneumonia dx, and wish I'd done that sooner. I still need to add extra foam pads & pillows under & over it to make it higher, and last week it STILL wasn't enough. I sleep with my head raised at least a foot.

I eat nothing spicy, no sodas, & stop eating a couple hours before bedtime. I know all my triggers from keeping track of what I eat for years also. I take Prevacid daily. But the physical problem of the now-major hernia prevents my efforts from eliminating the problem. I assume the hernia has gotten worse from the coughing. Sometimes, if it hasn't settled down by bedtime or if I wake choking, I sleep sitting straight up in a chair for a couple of hours.

So anyway, we'll see if the surgeon thinks my hernia is fixable, and, if not, I'll continue my old routine of propping myself up at night. As an FYI - there are tons of options for buying blocks to raise your bed (I've got them- can't use them) and foam sleeping wedges (get the longest, widest one you can, to make it more like a slow rise and keep from bending your body too much). I got all mine from Amazon, where I could also find reviews & suggestions.

And, surprisingly, I sleep really, really well, usually 8 hrs a night, with plenty of fascinating dreams. :smile:

Wishing a good day to everyone!
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS or MS symptoms except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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