tag0620
Distinguished member
- Joined
- Nov 18, 2008
- Messages
- 175
- Diagnosis
- 11/2008
- Country
- US
- State
- ut
- City
- park city
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
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