Old 03-04-2009, 11:41 AM #1 (permalink)
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Default A trip to the emergency room...

Our infectious diseases doctor called us back and told us to meet him in the e.r. for a new MRI of the lumbar and thoracic areas of the spine. He wanted to see if that fluid sack had grown or something new developed.

We were there for 8 hours last night and sent home with no good news (got home at midnight...my poor 12 y/o had to sit there with us). If it was suspected staph..they were ready to admit him.

Unfortunately, blood looked fine and the MRI showed same ol' same ol' (slight herniation in the thoracic region that's not impacting anything, and fluid sack is still there in the lumbar region..but hasn't grown and they think as small as it is...it doesn't look like an issue)

I have him calling our back surgeon today to check and see if that fluid sack remaining after a year is normal, calling infectious diseases to see how we can keep pursuing anything on the infection route (I don't know if there are any other antibiotic treatments to try to see if we get improvements to see if there is something to how he's feeling)

I don't know where to look or what to attemp to try next! Any advice?

Thanks,
Tracy
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Old 03-04-2009, 01:12 PM #2 (permalink)
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Tracy,

I'm sorry that you seem to be hitting obstacles at every turn. I guess what I'm wondering at this point if it isn't time to branch out. I wouldn't let go of making your current doctors fully justify their stance, and fighting hard for other possibilities. I'm just wondering if now is the time to schedule an independent evaluation at another academic medical center with no affiliation to the U of U (I can't recall how much of this you have done).

Before you would ever accept an ALS diagnosis it seems you would want to have a second opinion from an ALS/neuromuscular disease specialist that has no affiliation with you current dr. I'm thinking somewhere like the Cleveland clinic, one of the MAYO campuses, UC Denver, UCLA. It seems like your specialists keep deferring to Bromberg's diagnosed. Part of this might be because he is the Utah ALS expert. My two cents.

Take care,

Robert
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Old 03-04-2009, 06:17 PM #3 (permalink)
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Tag, I agree with planningguy, I think you need to go back to square one and start all over again. I know how frustrating it is to try to get a positive diagnosed. Maybe a new pair of eyes could shed some light on everything your husband has going on, Good Luck, Margaret
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Old 03-04-2009, 07:30 PM #4 (permalink)
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Tracy, I wish I had some advice to offer you. I am a horrible advocate for myself and couldn't even imagine how I could encourage you to continue or improve this amazing (to me) investigation you already seem to be orchestrating. So I will echo Robert's (and Margaret's) advice...do what he says!

I feel for you regarding the 8 hour ER visit. I assume you were in a room, and not the waiting room for the majority of that time...(as if that is better?) I used to be an ER "liaison"...I had to help the people sitting in the waiting room for 4, 6, 8, etc hours understand the meaning of "triage". Gosh, what an awful job that was.

For what it is worth, know that everyone here, whether they post or not, is following your husband's story with close attention. Your commitment and determination in finding answers are really inspirational, especially to those of us who need to learn advocacy skills.

You are so convincing (I think) to lay people in establishing reasonable doubt regarding the accuracy of your husband's diagnosed. I am crossing my fingers that this line of reasoning/questioning leads someone within the medical field to a different answer.

Take care

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Old 03-05-2009, 07:07 AM #5 (permalink)
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Tracy,
I'm keeping you and your husband in my prayers, praying that you get answers soon.

I worked in the ER 9 yrs ago, and it was often 8 or 9 hrs that the patients had to wait. Unfortunately, this would sometimes make it very hard on the staff, and the patients as well. I tried very hard to be the nurse that kept everyone happy!

Lately I've talked to many people that went to other drs (like rheumy, pulmo, gastro) and had more of their questions answered. I don't know if that's an option for you or not. I would hate to think you had to start all over, I know that just in the last 9 mo. since my diagnosed, I could open up a small library!

take good care and keep us posted,
brenda
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