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tag0620

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Joined
Nov 18, 2008
Messages
175
Diagnosis
11/2008
Country
US
State
ut
City
park city
Good Morning Everyone!
Well...where to start...He's 6 weeks into his anabolic steroid cycle and is able to stand on one foot (shaky, but couldn't do it before), can put his feet up on the table unassisted (couldn't do), can cross his legs unassisted (couldn't do), can do exercises that he couldn't do before (and has increased weight lifted on all body parts), etc, his fasciculations are greatly reduced and cramping is reduced from what it once was. He still has a hard time getting up stairs and walking on the snow/ice/uneven surfaces...but has not used his cane in weeks (and it was almost mandatory before).

He was on an antibiotic for Rocky Mountain Spotted Fever for 4 weeks as a precautionary measure after testing positive twice. We had to wait for new insurance cards to come in before getting his blood tests re-done to check liver/testosterone/prostate functions...and to make sure this virus was gone....in those two weeks of waiting for our insurance...he started getting weaker...when the blood was tested...he had a THIRD positive for RMSF...it's BAAAACK...and could explain his weakness starting to return. We have now had "infectious diseases" at the University of Utah agree to see us after this positive. We go in on Friday of this week.

We don't know if it is in fact Rocky Mountain Spotted Fever (it's VERY rare where we live)...with the timing of when he started to go downhill...we wonder if he may have contracted a hospital born virus that may have attacked his spinal cord during his surgery that is showing up on tests as RMSF....hopefully we'll be able to figure this out.

I just find it interesting that he keeps testing positive for a virus that if left unchecked will attack the central and peripheral nervous systems...and can cause partial paralysis of the lower extremities...btw...there has been no spread that we can see to the upper limbs in strength and no atrophy in upper body....just the one "off" emg which we're hoping can be explained by this virus.

We have not been back into the als clinic since his "diagnosis" as we still don't want to accept that diagnosis with everything else that he has going on that no-one other than ourselves and our family physician want to look at (1 1/2 yrs severe spinal stenosis/broken back, fusion surgery, 3 positive RMSF tests)...but at least now...infectious diseases thinks this may be something to look at....so wish us luck...(this doesn't keep us from being terrified after getting that initial diagnosis)

btw...here is some inspiration...he's not letting this diagnosis slow him down...(this was taken in Big Sky MT this weekend...his third sit-ski lesson!)

sitski3.jpg


He's hoping to have his legs back for next season...
 
AWESOME! Thanks for sharing and best wishes!
 
tag,
Great picture of your husband skiing! Sounds like ya'll are trying to stay positive during this journey!
I pray for a good dr visit with the infection dr this week,
Hang in there, sounds like he's doing good-
You're in my thoughts,
-b
 
Thank you!

Thanks Cindy...I'm so glad to read about the direction they're looking on your diagnosis!

Thanks Brenda...We temp cancelled our second opinion appt at the Mayo in AZ until we follow up on this virus lead. For stress management, money/time management...we're going to look at one thing at a time. If he ends up having a virus that attacks the nervous system (we hope)...we'll hopefully have our answer and can seek appropriate treatment and I HOPE put this als diagnosis behind us.

We're feeling a bit angry again that this specialist never checked his blood and didn't want to do any other testing (literally saying it was a waste of time/money and gives us a false sense of hope), prescribed Rilutek and gave us the "binder" showing us how als can progress. If he in fact doesn't have als and we followed his diagnosis and instructions...my husband's legs would have continued to atrophy and he would have ended up a paraplegic in a wheelchair.

We kind of rolled the dice with the anabolic steroids and heavy weight lifting schedule...but so far...he's been a bit more mobile and has not deteriorated any further at all. I'm NOT recommending this for others...but with his injury/surgery/virus..we felt (along with our family dr) it was worth the risk to prove him wrong when he didn't want to listen.

Just hoping I can keep my sanity! I have so much respect for everyone in their own journeys...you're all in my prayers!
 
Neat picture, and thanks for the update. Given the response he's had thus far, it seems like the infectious disease route is the way to go.

Take care,

Robert
 
Thank you Robert!

We sure hope that this will be it and prove the als diagnosis wrong....

I promised my husband I'd stay off of the boards for a while...so I'm trying to catch up with everyone...I saw your low B-12...where is your next stop? Are you still going to UofU?
 
Tag - You might have read this already in Cindy's post, but I think I'm actually trying to decide between Colorado and the Scottsdale Mayo. I'm feeling a bit weaker in my joints, and losing a bit of grip strength in my left hand. Honestly, I think it was your husband's experience with the U of U that has made me rethink.

A lot of my struggles started after a blood infection approximately two years ago. The last thing I want is to be handed a packet and wished well (Even though, ALS isn't on the table for me right now based on EMG and reflexes). I would like a more agressive approach with doctors who are willing to speculate, and try to intervene with whatever is going on if it makes sense (antibiotics, IVIG, steroids, extra-strength Tylenol, etc ).

Best of luck as you move forward,

Robert
 
tag, I live in GA, but got to ski at Big Mtn fortunately about 6 years ago. I guess this is different than Big Sky?

Big Mtn is near Kalispell, and it was the one of the best ski experiences of my life. I only had one afternoon as it was a business trip, and I borrowed a jacket and gloves and rented the rest. I think I had on jeans. But it was a perfect day at a perfect place, and I could literally see for 40 miles from the top of the mountain. The runs were 15-20 minutes long and almost nobody on the mountain.

One of my best ski memories ever!
 
You were further north..but it is a cool state!

Big Sky is about an hour outside of Bozeman...but...they said the vertical is really steep and the runs are really long. They had a blast. Our son is looking at MSU for college so they were up there on a visit and found this great adaptive ski program in Bozeman that would take him out for lessons on the sit ski with volunteers. AWESOME
 
Robert,

I agree...that's why we've taken this into our own hands before we roll over and accept what we think is an extremely hasty diagnosis without other testing.

We may end up down at the Mayo or over in CO as well depending on how this goes.

It's amazing how many stories we've heard...a nurse drawing blood who was diagnosed with lupus and ms turned out to have had lymes disease....a woman at church who was diagnosed with ms turned out to have a heart condition...an acquaintances father who was diagnosed with als in his 20's...he's in his 80's now with 5 children...he's in a wheelchair...but the progression of conditions stopped after years and now they're not sure what he has/had...but he's had a very full life.

I wish you the best in your search...we're thinking of you...

btw...if our virus diagnosis pans out...we're going all the way back to our orthopedic surgeon, the neurologist that he referred us to, the neurologist that gave us the als diagnosis...and the head of the neurology board at the UofU to try and make sure that they are more thorough and more tactful in dealing with cases like ours. My husband has also been offered the chance to go to a market research study on the UofU neurology dept and is gladly going to participate to give his opinion. We'll see.....
 
Tag,

I am praying that your husband continues to gain his strength. He might need progressive longer term treatment for the rocky mountain spotted fever. Please keep us posted and continue your fight.
 
Tag,

I got the same letter... tempting, but the 60 dollars they are offering is negated by my eight hour drive :) The Neuromuscular specialist I saw wasn't Bromberg, but worked in his group. Pleasant enough guy, just didn't have any real ideas on the symptoms as they were presented at that time.

Robert
 
Robert..

He could care less about the $60.00...he just wants his experience told...and considering he works in the city...I think he's going to do it.

Whether it does any good or not...I don't know...but I'm not married to a wallflower...can you tell? lol
 
Tag,

I am so intrigued by you and your husband's experiences. This virus route sounds so very very promising. It is wonderful that you share this story here, for all to see now and in the future. I am crossing my fingers for you-

Lydia
 
I was being facetious. I would certainly go, if I lived close enough, just to give them some feedback (Like: If someone travels eight hours for an appointment they kind of expect you, not your fellow, to conduct the neurological exam and EMG).

Your husband certainly is admirable and driven. My one and only ski lesson consisted of my brother taking me to the top Beaver Mtn., and trying to get me to learn by a trial by fire on a standard run. Needless to say, a ski instructor took pity on me, and gave me a free lesson just so I wouldn't kill anyone on the way down.

Ate mais,

Robert
 
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