Back from Neuro and unfortunately I don't feel relieved

[tag0620]

He confirmed that everything points toward the diagnosis that was already given with just a few abnormalities.

...but...

He did a spinal tap today (unfortunately it looked clear as crystal and he said infection would normally look cloudy..is this an always?), took more blood to do more testing there, and we have a complete MRI of the entire spine and brain next week.

At least he's willing to test and at least he was understanding about the lack of bedside manner we received when we got the initial diagnosis.

He said the strength gains are most likely from the anabolics kicking in on unaffected muscles and that the Doxy might be acting as an anti-imflamatory on the nerves making him feel better.

He still does not understand why RMSF keeps showing back up in his blood samples.

We may have a muscle biopsy ordered at some point as well, but as of now...not yet.

Should I insist on inspection of the fluid sack that they think is so small and probably benign? It's still showing at the surgical site almost a year later.

It was also interesting as I was watching that he seemed to have started showing sensory problems in his feet. When the dr. asked him to say when he felt a tuning fork stop vibrating 100%...he told him...then the dr. moved it up to his hand (without vibrating it again) and Jim could feel the residual in his hand (so he felt no vibration in his foot when there was still minimal vibrations going on). He also had a stick that had one side metal/one side plastic. He had Jim close his eyes and tell him which side was colder on his skin. He was wrong several times (by saying the plastic was colder) and couldn't differentiate through most of his left foot and calf (He could tell no difference between the two).

This is new to us...should this be happening?

It seems that the fasciculations in the upper body combined with the dirty emg of the right hand/arm/neck/cheek that is throwing them into als mode....of course combined with the lower body symptoms.

We just feel like he sucked a little hope out of us today...but we're still not giving in!

He's down flat on his back this afternoon recovering from his spinal tap..time to bring him a fresh drink to keep him hydrated.....

That's our news...any thoughts would be welcomed!
Tracy

 

[laurel]

Hi Tracy,
We were all hoping for better news. I think there are still a lot of unknowns. Why does he keep getting positives for RMSF, and then the comment about the Doxycycline making him feel better as it may be acting as an anti-inflammatory on the nerves making them feel better. Would his nerves be responding at all to an anti-inflammatory if it was ALS? I don't know what to say about the fluid sac. Maybe you could email Wright and ask his opinion. Your comments about your husband's response to the vibrating instrument and reactions to feel of metal or plastic don't really narrow things down in my mind. My husband who has CIDP has had different responses like that at different times--depending if he is having a flare up. And I have had MS for over 20 years and I have parathesias with flare ups too. Don't give up on your quest for answers. You are in my prayers.
Laurel

 

[lydia]

Tracy, I swore I posted to this but don't see it. But I echo Laurel's comments; I don't get the effect the medicine is having...because wouldn't everyone with ALS take it then, to prolong their strength & function? I am still holding out for it being something different...there are soooo many variables going on with him, it is hard to believe. I hope you boh are holding up ok.

Lydia

 

[brendapals]

Tracy-I'm sure you're both exhausted and hope you are resting this weekend. It sounds like a lot of different variables to have to deal with. I'm sending good vibes, prayers, and hugs your way,
take good care,
-b

 

[tag0620]

Thank you!

We've had to calm ourselves down from our appt yesterday.

We've decided that we have to keep reminding ourselves that these symptoms did not come out of nowhere....we will keep reminding ourselves of the odds....

What are the odds of having an abscessed tooth pulled the day before spinal fusion to correct a severe stenosis only to find out that his back was broken for a year and a half prior and have rocky mountain spotted fever show up in his blood 4 times and yet be diagnosed with als...all in the same time period.

That's what is holding us together...we have hope...and we'll hold onto that with every fiber of our being

We keep questioning the rationale about the Doxycycline too. I don't see any way that he would gain the level of improved functionality, strength, and balance that he did in his legs just from an anti-inflamatory effect. I don't really think they understand the level of gains that we've seen come and go.

I also just read a blurb on a spinal epidural abscess that says you may want to reconsider a lumbar puncture if this condition is suspected as you don't want to introduce the infection into the spinal membrane...which to me says that it's seperate from what a spinal tap will show...so this is not the end all be all for us.

I just don't feel like all stones have been turned until someone looks at that unknown fluid sack...however small it may be.

Thanks again!

Tracy

 

[laurel]

Hi Tracy,
I agree that it is very suspicious that some sort of bacterial or even viral thing is happening. One thing we have learned with our saga with neurologists is that it doesn't seem to be an exact science. My husband's neurologist still says my husband has a very rare variant of CIDP, and she remains surprised at his response to IVIG without adding immunosuppressants. And the first neurologist just threw up his hands not knowing what hubby had. And she is surprised that he has regained some muscle in his hand --she felt that the atrophy of his thenar muscle was permanent. We have worked diiligently on mild exercises for that hand and see some muscle building up. He deals with tremendous fatigue which in the beginning she says wasn't CIDP, and now says is. So we get lots of mixed messages and wind up quite confused at times. From all my reading, it seems like some of these diseases might be on a continuum. I even read of one theory that untreated CIDP patients can develop ALS. I was surprised during my husband's diagnosing process how few questions were asked about preceeding infections. Yet on the CIDP forum a very large percentage of patients mention having had a significant infection prior to getting CIDP. I really believe that people who are diagnostic enigmas should be tried on antibiotics, steroids, and IVIG before being given an ALS diagnosis. And that those drugs need to be given for a long enough period to allow them to be effective. I have heard of so many who perhaps had one or two treatments of IVIG--yet reading the forums there are many whom it took 2 or 3 months for them to see improvement. Cost is an issue with IVIG, but steroids and antibiotics are inexpensive. Keep turning over those stones Tracy.
Laurel

 

[tag0620]

Thanks laurel!

We have another pattern that has emerged..

The area around his surgical scar is VERY swollen AGAIN.

When on antibiotics...the swelling goes away...when off antibiotics...the swelling is back.

It's not where his lumbar puncture was either...it's all around his surgical scar.

I mentioned this to infectious diseases and to the new neuro...both kind of dismissed it...but this is another event that keeps repeating in conjunction with the Doxycycline.

Significant? Not significant? What do you think? Do I have him call infectious diseases or the new neuro with this?

This is just crazy!

 

[brendapals]

Uhm...Swelling AND redness? Sounds like 'something' could be going on at his surgery site maybe. And if it clears up when on the doxy, something is going on. I hope he calls his dr tomorrow, if it's an infection in there, someone needs to take a look at it.

Or at least that's what I would want to happen if it were me. Hope you are both getting some rest tonight,
take good care,
-b

 

[laurel]

Hi Tracy,
Can you involve your family doctor in advocating and advising with these things? We have found our family doctor to be a God send. She will listen at length and advocate and stay on top of things for us. She listens with a very open mind. And when she writes a letter to another doctor or phones them it has much more impact than when we do it. She has greased the wheels for us on a few issues.
I think I would go the infectious disease doctor route versus the neurologist route, but perhaps after having the family doctor take a look to document what you are seeing. I think the redness and swelling is significant and indicative of inflammation/and or infection. I would suggest taking some pictures to keep on file. And keep very detailed notes that are dated.
Laurel

 

[tag0620]

No redness or heat to the touch...just swelling

His 5-6 inch scar becomes a "depression" in the middle of puffy skin that's very firm and "full" for around 2 inches above and to the sides of the scar.

This is all about 3 inches below the location of his lumbar puncture mark from the other day

We've talked about our family physician (who we love), but agree that #1, this is way over his head..and #2, if the Doxy that he put him on was possibly masking another infection, are we getting too many hands in the pot (that's a double edged sword..as the RMSF findings were because of him, and we're seeing a pattern with the Doxy)? He's also incredibly busy as he just started his own new clinic in our town...but he's an old gym buddy of my husbands..and I know he cares. I think everything has to be checked with infectious diseases..I feel that might need to be the core.

I read that a suspected spinal epidural abscess might need to be surgically explored by a back surgeon and we have an appt with the surgeon who did his fusion on April 2nd. So we're going to ask him about looking at that little sack of fluid if nothing else shows up in the mean time.

Thanks everyone for letting me talk this through and for the feedback....

If this is als, we can make plans (we've done some..but oh how emotional those tasks are)...but if this is an infection..we're on a race against time...not only to save what's left of his legs...but quite possibly his life.

Tracy

 

[tag0620]

I'm going to throw a question out there...

...and need to see if it's interpreted the same way that I'm interpreting it.

We now have redness and heat forming around the old surgical incision to go along with the swelling that has formed...and we haven't been able to get a phonecall back re: this in two days.

So...my question...we were initially told that Doxycycline would not have any impact on the type of bacteria that would be causing his symptoms or a spinal epidural abscess which infectious diseases has not ruled out yet. The dr. in infectious diseases told us this when we talked with him over the phone while on vacation and I asked about his up's and down's on and off the antibiotic.

In reading...the most common bacteria that causes a spinal epidural abscess is staphylococcus aureus.

I have been trying to research the anti-inflammatory effects of Doxycycline and came up with the following....

"Abstract: Proinflammatory cytokines mediate the toxic effect of superantigenic staphylococcal exotoxins (SE). Doxycycline inhibited SE-stimulated T-cell proliferation and production of cytokines and chemokines by human peripheral blood mononuclear cells. These results suggest that the antibiotic doxycycline has anti-inflammatory effects and is therapeutically useful for mitigating the pathogenic effects of SE."

Would anyone else interpret this to mean that he *could* be showing improvements from a staph infection by taking Doxy?

Thanks for any responses....

Tracy

 

[BethU]

Hi ... I know nothing about medicine or the question you are asking, but if you've got redness and heat, I think you need medical attention right now. If you can't get phone calls returned, I'd go to the ER. Better safe than sorry.

Good luck.

 

[planningguy]

Tracy,

Like Beth I don't know anything about the particular antibiotic or snippet you posted. Redness and heat do sound like infection (espcecially if your husband is running a fever), I would echo Beth in getting him in to the doctor or ER promptly.

Although I want to explore it further, my own bout with infection was a couple of courses of vincamycin (sp?) and levaquin.

My brother's experience was much different. In his case there were two pieces to the puzzle. The first was locating the source of the infection (of which there where many). The second was getting the right antibiotic coctail. This was adjusted several times in between surgeries. His surgeon consulted with a couple of infectious disease folks at Duke, and ultimately sent him to the MAYO.

His was an obvious case of infection (actually more than one type as he got both staph and strep infections), and it still took multiple tries to pin down and get right. Thankfully he is much better now.

I will continue to wish for the best for you and your husband.

Take care,

Robert