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tag0620

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Hi all,
Went to the UofU infectious diseases today. The first doc did the cursory physical exam (strength test, reflexes, eyes, ears, throat, etc), then just wanted to talk, and listen, and take notes. He took our blood tests and the readings (explanations) from our MRI's and said he was going to step out, try to put all of the data together with his notes, and return with his "boss" to let us know what they thought.

When they came back in, he returned with his boss...she listened to our story again...but asked him to read the "findings" page from the Oct MRI again. She asked us if we understood exactly what it meant and explained that there was a slight slippage of the disks the level up from where my husband was fused in April...and asked why no one had been looking at his back to which we responded "that's what we've been asking". She said that EVERYTHING she's seeing as far as atrophy, weakness, symptoms is something that can be explained by the level of the spinal cord that had injury/trauma/surgery...it's all lower body...she also said the peaks and valleys that he's been experiencing are not typical to als...that normally it's a steady decline.

She then took the MRI down to radiology at the hospital and looked at it with the radiologist. #1. there is still fluid around the surgery site which could be residual post operative fluid or it could be infection (so they'll run more blood tests to check for bacteria and many other things), #2. she thinks that next level up on the spinal column shows nerves that might be fairly pinched and scheduled him for another, more detailed, digital mri with and without contrast, #3 she's referring us to another neurologist (unfortunately in the same building as the one who hastily gave us the als diagnosis.

She also made a comment that I need advice on. She said diagnosed als patients who are far enough along to have a confirmed diagnosis will show an inflamation around the edges of the spinal column...and Jim doesn't show any of this. Does this sound correct as I haven't heard about this before.

Anyway...she doesn't think it's RMSF but is checking for other forms of infection just in case...she was shocked that he was diagnosed this quickly without a lumbar puncture or biopsies or a brain mri...She is the first person to look at what started the problems in the first place and then move on from there instead of dismissing the other problems in favor of a terminal illness, and she DOES NOT think it's als although she's not a neurologist (always have to have the disclaimer ya know...).

I feel like we're back at square one...but that's a better vantage point than at the edge of the cliff with a diagnosis...at least there's room for some hope now.

Thanks everyone! Blood on Mon, MRI on Wed, next neuro don't know (hurry up and wait)!
 

BethU

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That's wonderful. WONDERFUL ! I am so glad for you both. What an ordeal you have been through.

Let us know what happens as the tests progress. :) :) :)
 

tag0620

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Thank you Beth!

I hope so anyway....

Do you have any knowledge or advice of that inflamation of the spinal column that would show on the MRI that she was talking about?
 

sdsyd

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Best of luck to you in finding the cause of the problems and then to FIXING them!

Love,
Cindy
 

Zaphoon

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Sometimes it is a good idea to go back to square-1. To some medical folk, that square can look like an octagon and that's not good.

Here's hoping they can narrow this thing down to some pinched nerves and unpinch those little guys.

I'd love to hear your husband is going to fully recover from all of this. On this forum, it is good to hear someone has had a reversal on their ALS diagnosed.

Zaphoon.
 

rose

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That is great news! To answer your question, I do not have any knowledge about what she was referring to. I do know that in advanced ALS something can be seen on the brain mri, but is not even close to what the doctor told you. Perhaps if you sent Wright a private message, he would have some sort of input about it.

Keep on keeping on! :)
 

tag0620

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Thanks Cindy..I appreciate that!

Thanks Zaphoon..I am HOPING that we can bring some good news to the board. What a mis-diagnosis it would be if it were all traced back to his injury and surgery. He'd be thrilled to have to head back into the O.R. at this point.

Thanks Rose..I did that (I finally have the capability). We've never had a brain MRI so this was all based on the MRI of the lower spinal column. This was new to me...so I need some clarification.
 

planningguy

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Getting to the party a little late. Unfortunately I don't know anything regarding the spinal colum inflammation. I just wanted to wish you the best exploring what was going on.

Take care,

Robert
 

brendapals

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I'm also checking in late-hoping you get great news next week after all the tests!
keep us posted,
-b
 

lydia

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Tag,

I hope that it turns out to be what you were suspecting and hoping all along (and can you imagine the conversations with those who pooh-poohed it!). This is looking so optimistic!

Lydia
 

tag0620

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We have an appt w/our back surgeon on Apr 2 and an appt with the 1st neuro who referred us to the als doc on Apr 1. These are going to be a couple of "come to Jesus" meetings to let them know that they shouldn't be so dismissive of their patients. Whether it makes a difference or not...we won't know...but hopefully. Yes...we'd love to hear what they have to say......

On a side note today...my husband's ex-wife has to go in for a root canal tomorrow...which made him remember....

DUH......

He had an absessed tooth pulled the DAY BEFORE HIS SURGERY. No one thought this would be an issue...but isn't an absess an INFECTION? Hello! He's going to call the infectious diseases doc to see if this may have played a part. It might not...but we don't want to leave any stones unturned!

This is the most extreme scavanger hunt I've ever been on I tell 'ya!
 

planningguy

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That's interesting... I had to wait quite a bit for a root canal after my hospitalization for a blood infection. In that time I took a couple of courses of antibiotics to kick the infection related pain back to tolerable levels before the root canal surgery.

I asked specifically about this issue during the ongoing diagnosed process. My ENT and neuro both commented that because of all the surrounding bone, it was rare to see a tooth abscess go anywhere. Let me know if anything comes of your discussion. If anything its probably more likely to be the blood infection for me, but you've piqued my curiosity.

Take care,

Robert
 

laurel

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I've always read that one has to be super alert for systemic infections following tooth abscesses. I know that I have been on antibiotics prophylactically with tooth abscess. So I think Tag is onto something. Here is one comment about that issue when I googled. COMPLICATIONS Of Dental Abscesses:
- loss of the tooth
- spread of infection to soft tissue (facial cellulitis, Ludwig's angina)
- spread of infection to the jaw bone (osteomyelitis of the mandible or maxilla)
- spread of infection to other areas of the body resulting in cerebral abscess, myocarditis, pneumonia, or other
disorders
Laurel
 

tag0620

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Ok..take this with a grain of salt...

...because it's from emedicine.com so I can't vouch for accuracy...I'm NOT self diagnosing, I promise...but it's another avenue for me to bring up with infectious diseases. (I wasn't going to post it...but I will since I've had a couple of people ask).

http://emedicine.medscape.com/article/1165840-overview

It's seems logical for us to ask based on the dental abscess as a possible source, the symptoms fit what has been happening, the risk of staph following spinal surgery/implanted devices/urinary catheters as possible sources.

We had blood taken today...but we're going to follow up to make sure this is all being tested for....
 

tag0620

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spinal epidural abscess...

...is what I'm researching right now.
 
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