Losing a summer and tossing out a fall.

[Santapez]

Curious as to where the tipping point is to where the testing stops though. Most likely, all of us have something and how far does one go to find these things that may or may not be an issue? While computers or doctors may be able to find a few items that lines up, do you start taking a drug to help avoid something and potentially, unknowingly aggravate something else? I mean, shit, to treat cancer at one point they thought you should cut away as much flesh with in a certain radius of the problem area to find out 20 years later that it didn't help.

In the future it will probably all be genetic testing and they will be able to give your parents, at birth, all the potential major diseases you may have and the percentage of the probability of getting said diseases. I can see the use for family illness issues but i also see the potential for drug companies to just having a field day prescribing and influencing drugs for found conditions.

For instance, my dad had a heart attack 5? year ago and my uncle (his twin) two months ago. My dad is active with crappy diet and uncle nonactive with crappy diet. Do I do something now or wait as i am active and have a good diet?

Just discussing here, not criticizing.

Need to make informed decisions. Just getting regular testing also gives you a trend to what's happening. Are my issues something I've had my whole life and slowly getting worse? Happened in the last few years? etc.

I'm pretty anti-drug but they do have a place. Sometimes it's not drugs but missing nutrients. How many Vegetarians/Vegans are healthy until years of lack of proper nutrients builds into a serious problem?

We have genetic testing NOW. And it's basically the same thing as the blood tests where it may give you a view into what's happening but you'll never get the full picture. Sure you may have a gene that says you may get diabetes, doesn't mean you should start taking insulin. But maybe a few less cupcakes may be a good idea...

 

[stb222]

Need to make informed decisions. Just getting regular testing also gives you a trend to what's happening. Are my issues something I've had my whole life and slowly getting worse? Happened in the last few years? etc.

I'm pretty anti-drug but they do have a place. Sometimes it's not drugs but missing nutrients. How many Vegetarians/Vegans are healthy until years of lack of proper nutrients builds into a serious problem?

We have genetic testing NOW. And it's basically the same thing as the blood tests where it may give you a view into what's happening but you'll never get the full picture. Sure you may have a gene that says you may get diabetes, doesn't mean you should start taking insulin. But maybe a few less cupcakes may be a good idea...

Not sure if you knew I have been vegetarian for 22 years or not. Not that it matters, just a cowinky dink.
I am aware of the genetic testing and have seen the difference of how many more they have found in the last 7 years. Once they change the laws to allow them to keep you blood and rerun it every few years (instead of pulling blood each time they need to run it) it will really explode.

Drugs have their place, just not as much of a place the drug companies sells us. Maybe @rick81721 can comment now that he doesn't have to work for a drug company anymore.

 

[Santapez]

Are you going to VegFest in Morristown on Oct 2nd? Are you taking your supplements? After I typed it I was thinking you were a vegan/vegetarian.

I'm pretty anti-drug but I'm pretty sure Thyroid medication is in my near future along with some possible off-label use stuff I'm going to try to get that's supposed to work wonders for auto-immune with no real downside. Maybe I'm more OK with drugs that don't have drug companies pushing their usage.

 

[stb222]

Are you going to VegFest in Morristown on Oct 2nd? Are you taking your supplements? After I typed it I was thinking you were a vegan/vegetarian.

I'm pretty anti-drug but I'm pretty sure Thyroid medication is in my near future along with some possible off-label use stuff I'm going to try to get that's supposed to work wonders for auto-immune with no real downside. Maybe I'm more OK with drugs that don't have drug companies pushing their usage.

I take a multi vitamin but thats about it.

 

[Magic]

I'm more OK with drugs that don't have drug companies pushing their usage.

Street pharma FTW.

How's your face though? Healthy enough to race? It's looking like I may not make Hippo, which is even more sad seeing as how there seems to be a big gap of no races between that and MartyCross. Maybe I'll try to make it...

 

[Dominique]

I don't like to complain

I don't think you are complaining and I really did want to know. Thanks for sharing (now I'm going to have to some research!).

 

[MissJR]

one thing i hate about all this (besides the obvious fact that @Santapez got hurt and then found out all this other stuff) is how dismissive the doctors all seem to be. if steve didn't actually sit down and read the damn surgeon's report, then he never would have noticed the note about his bone density... which never would have led him to get tested for other stuff... and how the primary care physician always seems to say "you're fine" when it's clear something isn't right... and steve actually had to tell the PCP what tests he needed to get. needless to say we are both looking for new primaries. :/

 

[MadisonDan]

Paging @MadisonDan - suggestion for Thursday night's menu? Main course, perhaps?

Hadn't thought much about it yet, but yeah, we can incorporate some higher speed cornering drills on Thursday....

 

[Santapez]

Hadn't thought much about it yet, but yeah, we can incorporate some higher speed cornering drills on Thursday....

Can should do them off-camber?

Oh, and actually I should thank @UtahJoe for the surgeon report. He kept saying I should ask for a copy because they are so interesting to read so I asked for it when visiting my surgeon post-op. At every step of this getting any medical information like blood test results is like pulling teeth. I didn't even get my DXA scan from the doctor but from the imagine center while getting my last x-ray. I was actually going to start a post asking if anyone had a Primary Care Physician they could recommend.

 

[clarkenstein]

My wife has Hashi's. If you need a doctor recommendation I can send you one or two that she has used. Endos are tough doctors to get a hold of. They all seem to have a lot of patients.

 

[Santapez]

My wife has Hashi's. If you need a doctor recommendation I can send you one or two that she has used. Endos are tough doctors to get a hold of. They all seem to have a lot of patients.

Thanks. I'll see later this week after I see them. I've actually heard this is a good office. I'm not getting the one everyone loves but I'd rather at least get in there first.

With Hashi it seems the Endo can only go so far as with what causes Hashi is sometimes external factors that can be changed, and that's not in their wheelhouse.

 

[clarkenstein]

With Hashi it seems the Endo can only go so far as with what causes Hashi is sometimes external factors that can be changed, and that's not in their wheelhouse.

Got that right. Since it's Hashi you'll swing all over - at least that's what we have seen. There are tons of "remedies" out there. It's almost overwhelming. I swear the immune disorders are all related in one way or another.

 

[MadisonDan]

Can should do them off-camber?

Would love to, not sure where though.....

 

[Carson]

I've found that even the really good doctors are frustrating. Either no bedside manner, so focused on one thing they forget others, or dismissive of anything found on the internet, even if it's a published study from AMA or something.

I've learned to be forceful but respectful. For what they get paid, you are going to listen to me for a few minutes, regardless.

 

[StayHydrated]

one thing i hate about all this is how dismissive the doctors all seem to be.

It happens way more often than it should, unfortunately. Maybe a function of people crying wolf, general apathy about the system, I don't know.

Example: Was seeing an orthopedist in high school for unrelated injury when my knees started swelling and waking me up in the middle of the night with a burning sensation. Swollen as in "I'm a thin guy and you couldn't discern my kneecaps" swollen. Went back to orthopedist for help and was dismissed with "Why do you keep coming to me, do you want to be a doctor or something?" Diagnosed with an inflammatory autoimmune disease <6 months later. My experience is that you (for better or for worse) have to be your own champion when it comes to getting the best care you can. Work on finding a great, supportive specialist, as a good one will be your rock basically until they retire - you can sometimes get a PCP recommendation from them, too.

I swear the immune disorders are all related in one way or another.

It's crazy. A lot of linked genetic markers, and a lot of commonalities in the signalling pathways. For example Interleukin-1 plays roles in some cancers, Graves disease, and Ankylosing Spondylitis, and many others by way of its regulation of Tumor Necrosis Factor. I'm also in the school of thought that thinks the microbiome has a lot to do with this stuff. It's mindblowing how many organisms are living in/on us, and they interact an awful lot with the different signalling pathways in our immune systems.

 

[Patrick]

seems alot to deal with, do you think you are going to beat @MissJR in mt man?
(i'll keep it light - but i'm glad you have info in hand. keep living.)

 

[Santapez]

I will crush her!

The gut stuff is the weirdest part of it all.

Cheese can be the reason my bones suck? Wtf

 

[soundz]

So then I found out I'm Hypothyroid, have an auto-immune disease called Hashimoto's Thyroiditis where my body is attacking my Thyroid.

I haven't been following along much, but this caught my eye. When I was 22, I was diagnosed with an auto-immune disease called Polymyositis. Basically the immune system attacks the muscles. Within 3 months the immune system ate away at the muscles so much that I was bed-ridden and waiting for my heart to stop and die. The blood work was off the charts. The CPK level which is supposed to be lower than 100 was over 10,000. When I got better, the doctor told me that my case was 9/10 with 10/10 being dead .. so they do come in different severity. They don't check CPK normally, so I was lucky finding the doctors I did and got diagnosed rather quickly.

Other than some unusual things that happened during that time and now I am alive, from my understanding they basically treat auto-immune disease conventionally with immuno-suppressants. The ones I remember taking are:

- Prednisone. The most they subscribe you in pill form is 80mg per day .. mostly much much less for mild cases. When I was in the hospital they were pumping me with 1000mg through the IV.
- IVIG. I don't think this is a long term solution as I just had a few infusions while I was in the hospital.
- Immuran. This one is a bit more unconventional. My understanding is that it works kinda like very mild form of chemotherapy where the medicine slows down the body's cells from dividing.

Prednisone can be pretty nasty (side-effects) if you are doing 80mg long term (1-2-3 yrs). Another option is to get high-dose infusions once a month. Immuran is kinda like taking vitamins in that you don't feel any different other than losing some hair the first few months of taking it. So I was also kind of lucky that I had a specialist who knew about these medicines and such. I started out with Predinsone, added the Immuran, then weened off the Prednisone.

My doctor told me at the time that if you are on the young side, these auto-immune diseases tend to burn out. So over the course of 20yrs I experimented with weening off of them. In the beginning I weened off too fast and ended up in the hospital again. Then another episode where I drove myself back to Boston to see my doctor because I felt it coming back. Finally, about 5 years ago I stopped taking all my drugs and I have been fine since.

I don't know how much this helps, but thought I'd share.

 

[Santapez]

It helps. IT HELPS EXPLAIN THE JIMMY MADNESS.

It helps to know that there's tons of crazy weird body things that happen to people. Seems people think this stuff never happens if it doesn't happen to them. At least I used to think that way. And your mentioning of CPK levels emphasizes how screwed up the medical system is, you easily could have never been checked, luckily you were.

Do you normally get checked though? I would be worried about a re-occurrence coming out of nowhere.

-Side note 1, I would seem entirely drunk if it were not for spellcheck.
-Side note 2, Broken clavicle is possibly worth it for the gross effect of flexing my arm so the clavicle and attached metal plate is pronounced and asking someone if the holes in my plate or the screws popping out look OK.

 

[MissJR]

-Side note 2, Broken clavicle is possibly worth it for the gross effect of flexing my arm so the clavicle and attached metal plate is pronounced and asking someone if the holes in my plate or the screws popping out look OK.

Uggh.