Necrotizing Myopathy: Are Statins to Blame? Article from Med Page Today! Something you may need to know more about... "Muscle Pain"? Not sure why? On a "statin"?? This maybe the answer...

 

This is very similar to what I went through a couple of years ago. I was on a statin, NOT for cholesterol issues. But, a statin, a small dose of blood pressure medication, and Lasix has became a "norm" for many who suffer a heart attack. IT seem the combination help to lessen chances of another MI. But, when I went in with severe muscle pain, especially in my calves... plus fatigue, weakness, and so forth, my PCP checked to see what my levels were to make sure I was not suffering not just from Myopathy, but worse, it can turn into Rhabdomyolysis. plus due to the fact that I also suddenly had double vision which grew worse as the days went by, my blood tests confirmed I had "muscle damage" in my blood. Much like the "enzymes" they look for immediately when the suspect an MI, also basically the same he found those enzymes and I should have not had any. Of course my situation was even more complex. I already had 2 "heart attacks" not just one. So, it was even more important to try and do any and everything to NOT risk another. Yet, the myopathy can be dangerous.... and it can cause permanent damage if left unchecked... so I had to go off the station for 3 months, or until my blood work showed NO muscle damage. So, just like "Prednisone" as my PCP calls it for me a "necessary evil"... without it, I honestly think I maybe unable do do much of anything. It helps to keep the severe inflammation down, but also again in turn, now I have severe osteoporosis due to the Prednisone and I am also "pre-destined" to have it due to genetic reasons and even the AI illnesses. Seeing this article once again brings to mind HOW MANY COMPLICATIONS, other illnesses in "tandem"... the meds and their side effects... all come with Autoimmune Illnesses, and arthritic illnesses, and many other chronic diseases, such as FM,CFS/ME and MANY others.... as PATIENTS so MATTER "what" a doctor might "tell me" I AM STILL going to be an EDUCATED patient~~~ I thoroughly believe some of my treatments, and even maybe some of my diagnosis, would NOT be right.... had I NOT became an EMPOWERED and EDUCATED Patient! I also know there is LOTS and LOTS of "bogus" material out there in the WWW... so you truly have to be diligent when it comes to what you think is accurate... but I NEVER hesitate... IF I Read, or see something online I feel "maybe" something my doctor had missed or not thought about and so forth... I PRINT IT, TAKE IT and Ask him to either allow me to ask questions, or let him read it.... or us just discuss the "main" issue whatever I bring in maybe relative to my situation.... of course I AM NO DOCTOR and by NO MEANS think I "know it all" ... YET, when it comes to OUR BODIES most of us especially women KNOW things very well..... Sometime I feel as if I am "educating" my doctors, and sometimes they tell me, that I am helping to bring new light to the subject.

http://www.medpagetoday.com/Rheumatology/GeneralRheumatology/52416?xid=nl_mpt_DHE_2015-07-03&eun=g773630d0r

In Remembrance, Reflection, Pride, and & Celebration. May YOUR July 4th Holiday be all you want it to be...

Have a Happy, Safe, and Wonderful July 4th Holiday Weekend!

 

I want to wish everyone a very SAFE, HAPPY, and reflective July 4th Holiday weekend! As I watched what the news had to say yesterday evening, it was pure shame I felt (even though I am not one of ""them") that our Grand Nation, has have to endure such horrific hate crimes, terrorist acts, and again "credible" threats enough to warrant each and every "celebration" especially in our huge cities, like Washington DC, New York, LA, and more to either have so many "patrols" out, or some have even cancelled their events due to the fact they feel it is NOT safe enough to even have a beautiful celebration of our Country, the USA! That also makes me mad, sad, and also even a bit fearful. Our small town has a "celebration" planned for tomorrow. We have now had a "Farmer's Market" that opens every Saturday to local growers, who come and sell their fruits, fresh veggies, and so forth. So, our town also is including some out of town vendors, even a small concert, and then a fireworks extravaganza* in the evening,, as well as one out of the Texas Motorplex, that they have been putting on for years for the holiday. Yet, even here, just because we are a "small town"... you NEVER KNOW... who could be a "lone wolf".... we have had our share of close calls in our country and the surrounding ones, and we don't live but about 35 miles from Dallas. So, we want to put aside our "fear" and think, "Oh, this would never happen here, not in our small community"... alas, sad but true, it only takes ONE person to create a horrific scene even in a small town.

So as we ready ourselves for cookouts, family gatherings, going to other celebrations, the lake, camping, and all of the many activities going on throughout our nation, be "viligant", watchful, and don't be afraid to "report" something you feel is "not right".... those types of "mindfulness" is what keeps us safe, happy, and being able to celebrate with family and friends...

I bid you ALL A Wonderful 4th of July Holiday Weekend... whether traveling, or at home cooking, wherever you are, be safe, be happy, we do still have much to celebrate and in so many ways... and Enjoy your Holiday! Hugs to All, Rhia Steele

 

FROM THE IFAA - Results from an in-depth study to IMPROVE EARLY & ACCURATE DIAGNOSIS of Autoimmune Arthritis diseases, as well as other AI disease that often are in Tandem!

Here is the link to this extremely important study of the importance of EARLY and ACCURATE Diagnosis when it comes to Autoimmune Arthritic Diseases, and other Autoimmune illnesses that often are in "tandem" with them. This report had hope of educating more of our Medical Professionals, Dentists, and Others, about these illnesses and diseases. It is SO Crucial to have an EARLY and ACCURATE diagnosis, so more Aggressive and targeted medications and treatments are done early, before so much damage has been done.

We have also seen and witnessed over the past couple of years SEVERAL often "very young people" are either extremely ill or even pass away due to the possibility that they were not diagnosed early enough, and had the proper treatments. That is just another reason why the report and others to follow are critical for all of us that suffer from these hideous diseases, syndromes, and illnesses.

Please see the report in its entirety at the URL below:

Early Symptoms of Autoimmune Arthritis Investigation

When "Radiology Reports" come in and say you had a "prior" laminectomy BUT you NEVER had LUMBAR Surgery~ - Really???

I have a VERY ODD Question for everyone.... Have you ever heard of someone having a test done on their lumbar spine, for instance as I did last Friday, AN when the Radiologist read and typed his his report, he says several times there appears to be "such and such" from a "PREVIOUS" laminectomy????? I have NEVER HAD LUMBAR spine surgery... NONE! So, was he SEEING something that could be "further damage" I have, that for some reason made him think I have had a laminectomy before? I've tried to think of a way to "google" the question, and just can't get it worded where I can find out why this might be. So, if anyone has ever heard of this. or knows anything about it, feel free to post. I GOT my reports from the discogram done on Friday. My Orthopedic surgeon has NOT gotten back to me, but the reports were already up on my personal "patient portal" this morning. So, I could sign in, see and print them. So, I already know what the tests say, but this business about him saying something several times about a "prior" laminectomy has thrown me for a loop....   ( can also be spelled laminotomy)  and can mean "partially removed" or "fully removed" depending on which was done... YET NEVER HAD I HAD THIS DONE???


More later.... but if anyone has an answer... or how to look this up so I can get an answer... feel free to post, post on my Facebook page, or send me an email... I am so curious as to "why" it "appears" I've had an operation on my "lumbar spine" when I never have....

I went ALL WEEK LONG, well since Monday KNOWING that my Orthopedic surgeon HAD the "discogram" results. I had "pulled" them myself on Monday afternoon, from my "patient portal" and printed both the discogram and the CT afterwards so I could read more about them.

FINALLY yesterday   REALLY??? I get a call from his office! (About time Huh)? So, of course he wants to "go over" the results with me... I can fairly well guess what that will entail. If what I am reading is how I interpret it, I am sure I will be going through at least a "1 LEVEL" "fix" between my L-5 and S-1 discs... so that maybe actually "2" not sure how they were looking at it.

Well, so happens Mom has an her appointment with Him next week also! So, I asked if there was anyway, they could fit me in either before or after her.... well some times things actually DO work out! Unless something changes he can see me right after seeing my Mom, on that same afternoon..... YES!!!!!!!! What a thrill... not of course getting to the results, for either of us, but at least NOT MAKING 2 TRIPS to thSAME DOCTOR in DALLAS in the same week!

I am still quite in a quandry about this "prior" lamenectomy thing. My suspicions are either since I had the CT back in early May, I believe, due to the osteoporosis, "something broke off" thus creating it to appear I had a "prior" removal of that part in my lumbar spine.... either than or the guy is a total nut!! Which also could be true!!! I'll keep you posted here and on FB... I appreciate as always the kindness I receive from so many of you.....

Fingers crossed that IF I DO have to have SURGERY, it will be more of a "micro" thing, without a huge ordeal of very invasive operating.... but time will tell......

More Great News from the AF and FDA - truly making headway!

 

Awesome News Once again from The Arthritis Foundation along with the FDA!

 

 

http://blog.arthritis.org/news/fda-osteoarthritis/

Ankylosing Spondylitis, Spondyloarthritis, Axial Spondylitis, AI, Hip,Lumbar/Sacral Spine Pain, Surgery, and Tests, Discogram

This comes at an EXTREMELY important time in my life as of now. I saw on my orders last week for the "discogram" that "Spondy" was also what my Orthopedic Surgeon felt was a part of my issue. I already have severe osteoporosis, which shows in my lumbar spine, my hips (both), and then in my "femoral" portion of my leg. 

Honestly, I didn't know a great deal about Spondylitis, Spondyloarthritis, or even Ankylosing Spondylitis, until lately. Of course I knew it is an autoimmune disease, and knew some things about it, yet, not until I began to have the very severe problems with both hips, especially the horrid pain, I can't sit for long, or walk for long... many things do really make the pain much worse. 

Then I began to look a bit into it, and mentioned it to my Orthopedic Surgeon. 



This in red represents my own DEXA scan (a 2nd one) and the results of what is shown to be severe osteoporosis.

DEXA Scan Results for myself in 2013

Summary :
 
Osteoporosis in the lumbar spine, femoral neck and total hip. The
bone density at the spine was overestimated due to degenerative
changes, as suggested by the significant discordance in the
density of the individual vertebrae.
Area BMC BMD T T% Z Z%
L2-L4 43.92 33.73 0.768 -2.8 71 -1.8 79
Total Hip 34.44 21.84 0.634 -2.5 67 -1.9 73
Femoral Neck 5.34 3.06 0.573 -2.5 67 -1.5 77
Comments:
DXA of the lumbar spine (L2-L4) reveals a bone density of 0.768
g/cm2. This value is 2.8 standard deviations below the mean for
young adults, and represents 79% of the mean density for
patient's age. Femoral neck bone density is 0.573 g/cm2. This
value is 2.5 standard deviations below the mean for young adults.
Total hip density is 0.634 g/cm2, a value that represents 2.5
standard deviations below the mean for young adults. Hip density
represents 73% of the expected density for patient's age.
___________________________________________________________________________________

These numbers show my hips, lumbar spine as talked about and femoral neck bone all show severe osteoporosis. Thus this could be also associated with spondyloarthritis, axial, and so on... As horrible is it is to know I am "shrinking, now by almost 3 inches in the past about 5 or 6 years... and knowing a fall, or sometimes with severe forms of this, you can actually do nothing but walk across a room and a hip break, or the compression fractures are usually a huge concern, which is one reason they are considered about anyone "shrinking" We all do to a certain extent as we age, but this is different for sure. I was happy to see this article and wanted to share it with all of you. 

 http://www.medpagetoday.com/Rheumatology/BackPain/52341?xid=nl_mpt_DHE_2015-06-29&eun=g773630d0r

CURE CLICK - "Clinical Trials" can be "simpler" - Lung Cancer, Heart Disease, Severe & Mild Asthma, Prostate Cancer - more to follow

 

 

 

Check out the complete catalog of clinical trials available on TrialReach

 

 

Want to know More about "Cure Click"?

 There are DOZENS of different graphs, charts, information, video's and more! Please feel free to let me know if you would like more information!

NEVER HAVE A DISCOGRAM if you can AVOID IT!!!

Gosh, talk about the test from HELL!!!!!

I am home now though... and through... just HOPING they FIND the problem... I know I just cannot fathom NOT finding something... so I shall see... they did 4 levels...


and those needles DO NOT FEEL good and when they put pressure in them with the dye that is even worse.... anyway... awaiting the results and I hope that is early next week... I HATE having to wait for test results...

by the way NO SEDATION, NO PAIN MEDS nothing... I knew they needed you Lucid enough to be able to tell them about the pain no pain where and so on... but usually they at least give you a mild sedative to help you relax.... long story... I shall tell more later... I am off the to sofa the rest of today, and maybe a bit tomorrow...


oh by the way I noticed "ankylosing spondylitis" was actually "one" of the diagnosis was that my Orthopedic surgeon had down... even though he "blew me off" when I asked when I saw him, but he did have it in with my diagnosis!!!!



http://www.mayoclinic.org/tests-procedures/discogram/basics/definition/prc-20013848

My Facebook Post about this Ordeal!!!!




Okay guys and gals... just a quick update!! FIRST OF ALL - NEVER have a DISCOGRAM if you can POSSIBLY AVOID IT!!! No "sedative" at all... no IV, no even pain meds when they were through... and he stuck needles in FOUR different places in my lumbar/sacral spine!!! It hurt like hell, and even hurt worse taking them out... needless to say, I PRAY we get some "positive" news... so I can move forward and get out of this horrid pain.... ALL that you read about these things and MORE are TRUE!!! BUT, of course that is the purpose... to inject that dye into the places the doctor deems causing the problems, THEN the dye pressure gives you either "pain" like you have, or MORE pain, or even a "different" pain... or sometimes no pain... thus it is strictly a diagnostic tool, so you have to be "lucid" enough to be able to tell them what it "feels" like, BUT some of the docs at least give you a bit some type a sedative, so you are at least relaxed a bit.... anyway, it is over and done with NOW... hopefully I will know something next week. In fact my Orthopedic doctors nurse actually called me while I had it done, and so I called her back to tell her yes, I just in fact finished it and was leaving the hospital... I was supposed to already have had it done several weeks back, but with illness, flares and so forth I had put it off. So, I HOPE they FOUND something!!!!! The last thing I want to hear is they FOUND NOTHING.. that would suck... I am off to go back to the sofa and rest for the day with the pups.... and will tell you more later when I am feeling a bit better...

Here is a link to just one site about this....

Tomorrow is THE DAY (I dread)!!!! Discogram on lumbar/sacral spine....

I've said a bit about this here, but I have not went into lots of details...

About  months or more ago, I began to have a huge issue with severe pain in both hips. I did notice it was a bit painful kind of at the last vertebra on my lumbar/sacral portion of my spine.

I still thought it was my hips. I've had to have them injected a couple of times before with corticosteroids to calm down bursitis, and the like.

But, I had to go to my Orthopedic Surgeon that done my shoulder replacement and then my 4 level neck surgery a couple of years ago.

Due to insurance changes my former insurance would pay the local Ortho Docs, but they are not taking my newer one. I had already had this being "diagnosed" with my Pain Doctor. In fact he did epidural injections in that area.. and for about 3 days, it felt better... and then it went back to severe and now I can barely stand the pain. In the past two weeks, I guess due to ALL I've been trying to get done around my home, from getting the lawn mowed (I tried to "weed eat" part of the front where It was so tall.  My neighbor that usually mows it I guess was working a different shift and had not been home to mow mine nor his. Well, the weed eating did not help my hips, bu it did knock down some of the taller grass/weeds...

Then I moved all of my furniture around in my bedroom and some in my living room, took down an old desk, hauled it out front to get rid of it, along with a couple of "Mac" desktops. They probably needed power supplies, but I just didn't want to mess with trying all of that, and then the hassle of selling them. So, they went quickly, just like everything else I sit out there. I put a free sign on something and before I can come in the house good, someone always gets is quickly... great for me... no having to try and have it hauled off, or try to take it apart enough that the trash will pick it up etc...

So, between all of that, trimming trees, and gosh you name it, I've had been doing things  I really should NOT be doing but someone had to....

Anyway, I face a discogram in Dallas in the morning (Friday)... we are already pretty sure what it will tell.. I imagine that there are either compressions fractures due to the osteoporosis... and I know some slipped discs, plus I have something kind of like "scoliosis" My spine in that area is "tilted" ...

So, everyone keep my in your thoughts - my son has to drive down here in the early AM, I have to be in Dallas at the hospital by 7AM and I've read several things about these and just about every thing I read, one tells it this way, and another tells it the other... I will add a couple of links below. Right now I can barely stand the pain, just to sit in my computer chair. It makes my hips again feel as if they are on fire....

http://www.allaboutbackpain.com/html/spine_diagnostics/spine_diagnostics_discogram.html


http://www.ainsworthinstitute.com/discogram

https://www.cedars-sinai.edu/Patients/Programs-and-Services/Imaging-Center/For-Patients/Exams-by-Procedure/Interventional-Neuroradiology/Discogram/Discogram-Procedure-Information.aspx

PAIN! Pain and More Pain - My Hips, my lower back - I am trying to do everything I can myself at my house but these hips are just bad!!!!

RA? Lupus? Spondylitis? (ankylosing spondylitis) HLA-B27 "genetic marker",  Sjogren's? and everything else to go along with them!!!!


WELL IF MY HIPS AND LOWER BACK WERE NOT BAD ENOUGH, I spent my "EARLY" MORNING (ABOUT 7AM) this morning, having to "weed eat" some of my front lawn. It has gotten so tall, I was in fear to even walk though it... I feared with all this rain, snakes, and I hate those things... so, since for some reason all of a sudden, the guy next door, (that ALWAYS) helped to mow the yard, has not even looked at me, much less spoken, or even mentioned my yard. My back is as bad, but my lawn mower is also broken (the pull rope is broke) and I did find the manual a moment ago, so I may get that fixed. BUT, honestly I am NOT supposed to be "weed eating" or mowing especially... not after all of my surgeries etc... and my back and hips are to where I can't sleep at night, they hurt so badly, My Mom and I went to have blood work done yesterday, and it had to be "fasting" so we went early, and then the other labs that my Rheumy wants done BEFORE I can even think about trying the Zeljanx, was supposed to be done there, they had faxed over the orders over a week ago, and I get in, and guess what NO ORDERS,.. so I got on my phone, called and the woman said she would pull it and fax it immediately. Well, Mom and I both already had the other labs finished and "still no orders"...

SO NOW I will have to go back. I even had the Rheumy office call me yesterday evening and said they had faxed it THREE times... well that is just about how my PCP is... they put things on a "desk" and then it does not get into my chart, and now I have to go all over again, and I am a very difficult stick.. so he got a vein 1st try yesterday.. it would have been the perfect time to get all of the blood for ALL of the labs!!! BUT no orders... so I know I am having that discography done Friday early morning. It is about an hour away, with traffic of course up all the way in almost North Dallas at Medical City Hospital. So, that means my son has to meet me very early, and we will take my Mom's car. His truck is so far off the ground, I have heck getting in it after having anything done like this. So, we have to meet in time at my Mom's to get to Dallas and to Medical City by 7AM Friday Morning... LONG DAY for both of us... because he lives up close to Dallas and has to drive down here, get me then drive me up there... I could go myself, but they will I think put me under "twilight" at least for this procedure, so I won't be able to drive myself home.... I didn't even get but about half of my yard cut down enough, and I had to stop.. the sun was coming up over the trees and I sure as Hell do not need another LUPUS FLARE!!!

So, now my front yard is "half chopped down"... me and the weed eater have heck... it is not all that heavy, but my arms are so weak after surgeries and so on, so they were like "jelly" by the time I got a bit over half of the really tall weed mess down... I am so in a pissy mood... I am so pissed that "someone" else wanted ALL of this, home, lawn, wanted to "remodel" and now who is stuck with it half assed remodeled and now going to have to do as much myself, and then I guess hire the rest out... and I guess someone thinks I am "rolling in the bucks"... NOT!!! REALLY????!!! Plus I am sure just like the injections a few weeks ago this trip Friday will be 250.00 my co-pay... I got to thinking the other day and thought, well, I can power wash the house, and get windows redone, and paint the back bedroom... and paint part of the outside... and then get someone to lay the floors where I need them... bathroom, kitchen and finish out my laundry room.. but I still need my lights and a fan finished as far as the electrical part... they are partially done, but SOMEONE never finished those, nor even "mudding" the bathroom... and I can't do "mud"... I mean sheet rock mudding... lots I can or used to be able to do... but some of this is beyond my body's limits for sure.... so needless to say, I am in a pissed off state of mind, about this entire ordeal... but it will get done one way or the other... because I DON'T GIVE UP...