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tag0620

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Aloha all!
We're back from a week in Maui! A little disappointing in that the weather wasn't it's usually perfect self (a bit chilly due to trade wind gusts up to 50 mph which caused a great exfoliation on the beach lol, and two unappreciate teenagers...but that's another long story)...but mostly because we had to rent a wheelchair to get my husband around and he was very upset about that! But...lots of good food, lots of whales to see, and some relaxing!

Now..the pattern..infectious diseases took him off of his rx of Doxycycline two weeks ago because they didn't think that his rocky mountain spotted fever positive was in fact a true positive...in that two weeks...his strength has decreased dramatically (thus walking with a cane again and using the wheelchair). This is the same thing that happened after his first positive for RMSF...they put him on a 30 day cycle of Doxy, he had greatly increased strength while on it, but after the 30 day cycle...within two weeks...the weakness started. Another positive, back on doxy, increased strength, infectious diseases...and you're at the beginning of this paragraph...

His blood tests from infectious diseases (we talked to them while on vacation) showed a 4th positive for RMSF, but the 2nd set with different parameters for RMSF showed negative...so they still don't think he has it.

His MRI...still shows that small bright spot of fluid on the left side of l5 and s1 (the site of his fusion surgery). The doctor said this is now of concern even though it's not pressing on anything because at almost a year after his surgery, post operative residual fluid should not still be there. CAN EVERYONE HOPE FOR INFECTION WITH ME HERE? He is getting in touch with radiology to see if the sac is big enough to do a draw on to test the fluid...and when we talk with him again, we're also going to insist on a lumbar puncture...we're tired of waiting and getting passed around...we want these tests done at once. If this is a spinal epidural abscess...he may have a staf infection and the neuro damage may be permanent once done...we don't want to lose any more of the legs and/or risk the mortality rate that this carries.

Anyway..that's it for now..we're going to start becoming pesky :twisted: to these dr's by calling frequently and acting as our own advocates...it's kind of sad that we feel like we have to stand on a chair in the middle of the office and scream "what does a guy have to do to get a spinal tap in this place?" (ok..my husband wants to ask who he has to sleep with to get one...I'm just being the more innocent party here!).

As you can tell...WE really still feel as if his limb onset diagnosis of als was a misdiagnosis and we're not taking it sitting down. It makes you wonder how many other people may have serious complications or die from other things that could be treatable if we were diagnosed this hastily (and we even have a history of other things that they weren't going to test for!)! I am so appreciative when I hear of Dr's that take the time to test for EVERYTHING...we have not had that so far!

Here's still hoping we can PROVE HIM WRONG!

Tracy
 

lydia

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Hi Tracy,
I follow your story with anticipation...so much drama! That certainly sounds like a pattern to me, I would be clinging to it. If he starts it again in a few weeks and those changes happen again...that would be 3 cycles of the pattern repeating itself, right? How can they disregard it? I wonder if you "objectively" document it somehow with video, or doctor strength tests, or physical therapist, or whatever...if it would lend more legitimacy to your observations. Some times I think they just don't believe what their patients are saying...or maybe we don't use the same words they would use to describe some phenomenon so if you document in some way above and beyond your own self-report....

So I will cross my fingers for infection (only here would this be a good thing)

Lydia
 

tag0620

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Thanks lydia!

We laugh about hoping he has an infectious disease too!

We're hoping that if we can prove his diagnosis wrong..it'll help people to stop trying to "convince" themselves that this is what they're dealing with and to be their own advocates instead of a victim and to live life with gusto instead of in fear....regardless!

We feel that even if we can prove a misdiagnosis...the diagnosis was given to us for a reason...if that means we can figure out how to be advocates in healthcare, or donate what we can in time and resources...we'll find our path if we come out the other side.
 

planningguy

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Tracy,

Hmm... I would keep coming back to the improvement with antibiotics. Weren't they debating on doing an IV antibiotic cycle with a PIC line. My brother has had to do multiple courses of IV antibiotics to shake what was gnawing away at him. They finally got what we pray was the last of it after they opened his arm back up, then blasted him with the IV again.

Infection can be a tricky beast, and in my brother's case they missed some bone fragments and shrapnel in the wound track in his arm. This is taking into account a trip to the MAYO after other docs had been digging around for a few months, so I can imagine other types of infection can be difficult to pin down.

Best of luck,

Robert
 

tag0620

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Nope Robert...

That was something that was an offhanded thing "if" this was accute RMSF...but they don't think it is.

If this is a spinal epidural abscess...we're not sure...but I've read that they can even go as far as having to remove the implant from surgery and all related bone grafting as well as surgically cleaning the infection out...but until we know what it is...we really won't know anything about a course of treatment.

My husband left a voicemail this morning so we're now in "wait mode" again until we hear back.
 

tag0620

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lol

I wish there was some scale to show the odds of having a dental abscess removed the day before major spine surgery, finding in surgery that you've walked around with a broken back for a year and half, only to come out of surgery and be diagnosed with als....all after having an unrelated relative (his ex-brother in law) pass away from bulbar onset als within the same year!

I tell 'ya...I'd rather win the lottery if this can happen!
 

tag0620

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just heard today...

...that radiology thinks that the sack of fluid showing up on his MRI is too small to get a needle into in order to take a fluid sample to check for infection.

...so...

we're back to waiting to try and get in with this new neurologist in order to get a lumbar puncture done.

He was up last night alternating between hot and cold...so it seems he is running fevers and his blood pressure was up this morning when he went in for his testosterone shot.

Ugh...the waiting...
 

crystalkk

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Tracy,

If he has a fever now, it definately seems like an infection. If I remember correctly he is off the doxy again also.

Why can't the infectious disease dr order the lumbar puncture.......
 

Shatzie

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A little piece of advice...

I have learned from experience that when you get a spinal tap, you should insist on having it done in radiology. I was diagnosed at a ALS specialty clinic, but they had to stick me five times to get enough fluid to test. Then I had a severe spinal headache for the next 24 hours. Now I have had three babies without any drugs, but I felt like I was going to die with this headache and nausea. So I had to have a blood patch. A blood patch is where they take a small amount of your blood and inject it into the spine so that it will clot and seal the hole that is leaking spinal fluid. When the radiologist got me on the table face down and looked at the needle marks on my back, he said "Now you know you should always go to radiology to have a lumbar puncture!" Needless to say I agreed with him. I was also told, after the fact, that you should have caffeine several hours before and for the next several hours after the procedure.
 

tag0620

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Thanks so much for the advice Shatzie!

I will pass this on to my husband!

I had read about the blood patch...so I knew to ask about that if we had problems afterward.

As bad as the test can be...he's really looking forward to getting it scheduled to try another avenue.

He'll be very happy about the caffeine! He's been on anabolic steroids and had to give up his soda fixes and extra caffeine to keep his blood pressure in check...but he starts tapering off of this cycle this weekend!
 

Zaphoon

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Shatzie,

Thanks for sharing your experience with the lumbar puncture procedure. That kind of information can save a lot of headaches!

Zaphoon
 

tag0620

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We got a call from neurology this morning.

We meet with the new neurologist tomorrow morning at 10am down in the infectious disease clinic at the hospital.

We have to be very careful about how we describe our experience with his fellow in the neuro sciences center who diagnosed him with als and just try to get him to try and DISPROVE the diagnosis with other testing (and in that..try and fix what's wrong) instead of just going along with this other guy.

This doesn't feel normal that a neurologist's office would call and ask if they can see us the NEXT DAY...so maybe we are being listened to through infectious diseases (I HOPE anyway)

Wish us luck!
 

violetivy

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Please post and let us know how the appointment went. I have been following your story and wish you only the best.
 

laurel

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Good luck Tag and Tag's hubby. Let us know how things go please.
Laurel
 

wheeler641

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wishing for the best for you, please keep us posted, margaret
 
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