More on RA- Critical News when it comes to how it Systemically Effects the Body...

There are several great links, article and information that is critical to know about  RA and how it can Systemically Effect the Body. Many people think of "Rheumatoid Arthritis" as "arthritis", which is TOTALLY WRONG!  "RA:(Rheumatoid Arthritis) can effect just about every part of the body... starting at the joints sometimes. Yet, it can cause horrible fatigue, heart problems, liver and kidney problems, problems with the brain, with they eyes, with the ears... and so much more. That is why you see so many of us trying to "get the word out" and spread the news these are serious illnesses that when you delve into them, you find they can be "deadly". Lupus, which is another Autoimmune Arthritis,  can even be worse, damaging skin, bones, the heart, liver, the lungs, causing severe fatigue, brain fog, and leading to heart problems and stroke problems. Women and/or men with RA have a 50 percent chance HIGHER in have a heart attack or stroke.

When I saw these a moment ago, I wanted to post them. They go along with the WAAD14 and all of the information, research, and activist roles we are in with the IFAA, the Arthritis Foundation, WEGO  and many others out there trying to get better research that would lead to a earlier diagnosis, earlier treatment, less sign effects & catch these illness BEFORE they do GARVE Damage as they have on many of us.                          


http://www.medpagetoday.com/resource-center/rheumatoid-arthritis/expert-interview/a/44104


http://www.medpagetoday.com/resource-center/rheumatoid-arthritis/early-diagnosis/a/44107



http://www.medpagetoday.com/resource-center/rheumatoid-arthritis/



http://www.medpagetoday.com/resource-center/rheumatoid-arthritis/Infographic/i/38228?xid=nl_mpt_DHE_2014-03-17&utm_content=&utm_medium=email&utm_campaign=DailyHeadlines&utm_source=WC&eun=g773630d0r&userid=773630&email=rhia@ravishingrhia.com&mu_id=5952786

Some of My Posts are worth "Repeating"...

As I went through Facebook this morning to read any new posts there, I found that one of my dear friends went to see her Rheumatologist yesterday. The prognosis was that her RA is worsening and is affecting her vision due to inflammation. So, she is headed for an opthamologist. I know that I had told my "horror story" over the "Neuro-opthamologist before here, but since I decided to tell the story there again for many that may not have seen it when it all took place, I also thought it was very "well worth" repeating again. The LONG of it, and it is long. That is the ONLY way I know to write about it. Start from the beginning about the double vision, since that sent me to an eye doctor in the first place to now when I am still waiting to hear from the Medical Board about how that doctor was "punished" if at all. So, below is how I told it this morning (very early) on FB. I still, even while I wrote it out again this A.M., find it almost too ridiculous to believe! I have had my "rounds" with doctors in the past, but nothing like what happened early that morning at one of the hospitals in Dallas in the operating room I was in.

My post from FB:
 It is wonderful to have a great rheumatologist that helps like that. Mine is an angel from heaven also. I one began to "see double". I first noticed it while watching television one evening. I would "see" the real car in the movie, then right behind and a bit upward I saw "another" car duplicate. It scared me so badly. I am on Plaquenil so I have to see an Opthalmologist annually. It began to get worse, and I would notice it then outside during the daytime. I went to my regular Opthalmologist, and thy put a "sphere" in my glasses. But, they sent me to a Neuro-Opthalmologist. There are only like 3 in the state of TX! Two happened to be in Dallas. The first one is a great doctor but his "bedside" manner was like a BRICK! Worse than that. He saw me like three times and told me NOTHING! He barely even looked at me, all of his 50 "staff" members seemed to do all of the exams. He decided since my "inflammatory" levels in mu labs were up, I may have Temporal Arteritis, which meant LARGE doses of predisone for like 2 YEARS! I mean something like 40 mg daily, which means my osteoporosis (mine is already SEVERE) would just get worse if that is even possible, I would puff out like a balloon (I already gain weight when I have to take the 14 day step down of it with a flare), my skin is already paper thin, my teeth are already having to be pulled out and decaying like crazy, I already bruise extremely extremely easily and I STAY bruised in some places forever, & so on. Every "bad" thing prednisone does I already more than likely have. As my PCP calls is the corticosteroids are a "necessary evil" for many of us. Needles to say, this guy did a "temporal artery biopsy". He never told me "how all that happens, what he would do etc." I had to look it up and then I even questioned my PCP again and asked him if he thought it necessary. Since I was already on a daily small dose of prednisone, even IF I had the Giant Cell Temporal Arteritis", it probably would not show on the biopsy anyway. So, I had it and that is another entire nightmare story! Basically, I had to file a complaint to the Texas Medical Board. He "blew up" at the nurse that was with me in the surgery room, while I was just waking up barely from the procedure. It was so BAD (I was STILL on the operating table!!) that the Anesthesiologist stayed with me to make sure nothing happened to me. Plus there were about 20 other employees standing where all of this took place, as he continued to YELL, CURSE AND SCREAM AT THE NURSE!!! They were standing at the ONLY DOOR OUT, thus I was there for the entire thing. They even called security on him. It is insanity to say the least. It finally got stopped (this went on for more than 5 minutes for sure), and I was taken by the guy who put me to sleep and two more nurses back to outpatient surgery. Boy, they were questioning me to make sure I was okay etc... but when they wheeled me back to outpatient we went RIGHT BY the doctor and he never said ONE WORD!!! To this day he has not apologized or nothing. I NEVER went back, but to see him for the biopsy results which were "negative" anyway. Even that last appointment he never said a word, gave an apology, nothing... but between my call to the hospital, and their calls to me, and reports sent on him to Medicare.. I filed a formal complaint with the Medical Board. My complaint was legit... in fact he went trial over it about mid October, and I know from another letter from the Medical Board, he is still even more under investigation and they are decided just how badly to punish him. The nurse really DID nothing "wrong" from what I was told.. she "opened" one of the sterol instruments in a way that did not "suit" him, so that is what the whole ordeal was about... I know this sounds like something from a horror movie, but this is the ENTIRE TRUTH! Talk about nuts! I was told my by Rheumatologist he used to be a doctor at the teaching hospital where my Rheumy is and they "got rid" of him due to his "temper". Okay after ALL OF THAT (sorry I got side tracked but I tell the story because PEOPLE need to know DOCTORS are not all SAINTS, and they don't know everything... go with your "GUT" feeling... if they don't suit you, find someone else.... So, I go to the only other eye specialist in TX that is close, and it takes like 3 months to get into see him. After all of this, he said it was my "Lupus" causing the double vision. He or "any" of them are sure why ( I STILL think I have a mild case of MS myself & my Rheumy basically agreed with me) so he prescribed an even different type of specialized "sphere" in my glasses so while I have them ON, I do not have double vision. But, without them on I STILL HAVE DOUBLE VISION!!!! Even through this, I went to 3 Neurologists and they could not really say if I have MS, or one seemed to think I have Myasthenia Gravis. Go figure! Which it is ALSO AN AUTOIMMUNE DISEASE! Okay after all of that rambling TIFFANY, definitely find you an Opthamologist that you feel good about. Go with your "gut" feelings about all of it I suggest. Not just the eye specialist, but now with the RA worsening, you may begin (I HOPE NOT) other symptoms... As you already know (OF COURSE) do your HOMEWORK! I know that sounds silly me telling you that. But I found out sometimes being the "patient" and going to a doctor, I don't see the whole thing "objectively" at times. So my husband usually goes so he can see from the "outside" of the picture, if you know what I mean... My heart goes out to you... my vision has worsened... and my glasses are wonderful BUT seeing double the rest of my like honestly SCARES ME! NOT ONE doctor... really could "diagnose" me... the nature of the "beast" of these Autoimmune Arthritic Illnesses... sometimes even the experts "don't know"... so I find I go in sometimes with MORE research, ask them about it, and pretty often, they will put me on a med I suggest, as stupid as that sounds. "We" as patients spend much more TIME than most doctors do "researching" every aspect of these illnesses... where doctors have to know so much more of a LOT of variety of illnesses, thus they sometimes are not even "aware" of the latest and greatest meds, research and so forth. They just don't have TIME enough to "research" each patients medical issues and symptoms as well as we can... that makes sense... with many patients, their time is limited about everything "new"... This AGAIN is where WE, the IFAA CAN AND WILL get these types of things RESOLVED!!! We can make the difference and we will.... all right I will stop my short "novel"... but I had to tell that... for you Tiffany, for all of us here, and for IFAA, I think those stories from those that are "inflicted" with these AAI can step up to resolve many things!!!


Wow! I know a small "novelette" when I post something like this!!! As I said above, this is why, WE MUST follow our GUT feelings when it comes to doctors, labs, tests, hospital care and so forth. They are all "humans"... of which we know we make mistakes. Many of those errors may not be "on purpose", BUT it still means OUR LIFE AND HEALTH in someone else's hands. So, anytime you are at a physician's office, whether it is for one of the AAI illnesses...OR the flu, ANYTHING, ask questions, if possible take a "observer" with you if possible. A caretaker, spouse (often they are both), a close friend, someone that can help look at the visit "objectively". When often go to the doctor, especially a new physician, and before we go, there is an entire list of things we want to ask. Well, I know for myself IF I DON"T make a LIST, a "physical" one, I will forget half or all I wanted to ask. It could be the doctor "answers" your questions before you have to ask. Yet, I find the opposite. Since they have lots of patients, getting "impatient" waiting, they all tend to me walking out of the exam room BEFORE they come in. There truly is NO excuse for it! BUSY yes most of them are busy, BUT as my own Rheumatologist has told me, they should NOT overbook patients and they do. You should NOT have to WAIT hours when you had an appointment set for months!!!! My PCP used to be so good about you arrived, checked in, sat a moment, and then they were calling you back. My PCP was in the room within 5 to 10 minutes at the very most. 
NOW, 4 years later; my appointment will be a follow up for 3 months in the future. I can almost guarantee, that I will be in the waiting area at the very minimum of 45 minutes. And even if I am called back to an exam room, it maybe 2 hours before he gets in!!!! I can understand if it is a "rush sick appointment". BUT when you have a SCHEDULED 3 MONTH AHEAD appointment, that is plain RUDE and inconsiderate!!! Many of these doctors now have posted in the waiting area, if YOU the PATIENT is LATE for over 15 minutes, they will "cancel" your appointment and reschedule!!! OR the one that really irks me, is that YOU WILL PAY 25.00 or MORE if you don't cancel at least 24 hours BEFORE your appointment! What about OUT TIME? WHY IS IT A "DOCTOR'S TIME" is more important than OURS? We have a life also, and are busy. Thus when we make an appointment way in advance we expect to not have to wait HOURS to be seen. Then by the time they walk in the door, they take a quick look at you barely, and then spurt out a few words, and as I said if I don't have that  YELLOW LIST in hand, mine will be out the door and gone. So, the LIST IS OUT as soon as I am in the exam room in plain sight! Now I totally get that they can't have patients constantly canceling appointments at the last moment, BUT there are "emergencies" that you may not know about until a few hours before that visit! Plus, why can't WE charge them? I've been there mor than once, and "he" has an "emergency" and he wants to change or reschedule, and that is okay. And what about paying us for spending often times HOURS for waiting on them??? Plus I have noticed now a nurse will come in and tell you the doctor maybe running late. But before I might sit there alone in that cold exam room for an hour and much more, and not one soul tell me what is going on!!! I've actually thought when it is a late appointment maybe they just left me there and closed up!!!! And I will say, NOT ALL PHYSICIANS are like this. I have several that are very prompt, and I may not wait anytime at all. But those few that do it to us need to have a course in "manners" especially "bedside manners". 

Okay, I've ranted and raved on this subject enough. I have about 10 irons in the fire now, and probably more that I have forgotten to write down! :) Blame it on the "foggy brain" as one of my friend's says. :)

A Flare, The FLU - I PRAY NEITHER!!!!!

I HOPE I am NOT in a FLARE!!! 

I have had to cancel me going to our High School's last football game with our big rivals over in Waxahachie, our county seat. We had planned to go several weeks ago and I bought tickets yesterday. BUT, it was NOT supposed to RAIN darned it! So, I have felt a bit "off" today for some reason. Just had a headache, my stomach not all that great.. and NOW it appears we will have rain about time for the game. Well if it were something extremely important, then I would "push" aside the warning signs of either a flare or my worst fear the flu. I have not gotten my flu shot yet and I've in the doctors office twice in the past 10 days. They were out of the vaccine this last time I was there, thus I have not went onto Wal-Greens and gotten it. Now I almost feel feverish, cold yet kind of clammy, and my legs and lower back are achey. So, bless his heart I guess he will have to go alone. He has called everyone we can think of, and of course the one time he tries no one is available In fact, one of the guys from his meetings has Lupus. He is in a flare right now actually. My husband called him earlier in the day to see if he was going. We had talked about catching up at the game and all sitting together. I met him Halloween night at the "birthday" meeting, and happened to mention the BAD "P" word! Prednisone… and something else was said and he happened to say he knew that P word well, he has Lupus!!! Wow, it is amazing how to "meet" other "birds of the feather"  Anyway, I DON"T want EITHER!!! And sure as HELL not the flu. Last time I had the flu, I got double pneumonia AND WHOOPING COUGH with it! I was on the sofa for about 8 days and could not barely crawl to the bathroom and back. It is a nightmare…. so at that time I had not been diagnosed with any type of AI diseases, but a PCP there already suspected it and was going to send me to a Rheumatologist there in Seattle. We came to Ennis before I went thus found out probably a great deal "too much" later about the MCTD, Lupus, Sjogren's, Raynauds, and the RA. Anyway, keep me in your minds over the next 2 days. I and my Mom are supposed to be going to a Girls overnight trip out on Sunday/Monday to OK, to Winstar! I am going to be extremely miffed if I am too sick to go! :);) Autoimmune Arthritis Illnesses??? "Ain't they grand?!"

Stem Cell Research - Possible breakthrough in treating MS

http://www.nlm.nih.gov/medlineplus/news/fullstory_82747.html
Thursday, April 9, 2009

THURSDAY, April 9 (HealthDay News) -- U.S. scientists say they've coaxed human embryonic stem cells into generating cells that might someday be used to repair nerves damaged by multiple sclerosis.

The researchers pushed the stem cells to grow into critical nervous system support cells called oligodendrocytes, according to a report released Thursday.

Oligodendrocytes produce the myelin sheath that surrounds nerve fibers like wire insulation. The findings represent an important step toward embryonic stem cell-based therapies in general, experts say, and also for cell-based therapies for myelination disorders such as MS in particular. At the very least, the findings should lead to a laboratory model of the illness' pathology.

"They are definitely laying the groundwork for being able to apply these cells in terms of a therapeutic application," said Timothy Coetzee, executive director of Fast Forward, a wholly-owned subsidiary of the National Multiple Sclerosis Society, which partially funded the study.

Yet at the same time, he added, "It illustrated for me the critical importance of not assuming that because you can do something with a mouse cell, that a human cell is going to behave in the same manner."

The research was published in the May issue of the journal Development.

At the heart of this study is a fundamental question: What's the difference between mouse and man?

It's not as silly as it sounds. Human experimentation being both morally and legally forbidden, researchers often use model organisms such as mice as proxies for human development. The underlying assumption, of course, is that these organisms have fundamentally the same biology as we do. Sometimes, though, that assumption turns out to be wrong.

For years, researchers using mouse embryonic stem cells (ESCs) knew that if they added one of two proteins, FGF2 or SHH, to the cells' growth media, they could reliably induce those cells to become oligodendrocytes. The human application was obvious: ESC-derived oligodendrocytes could either be used directly as a cell therapy for MS and related diseases, or serve as research tools to study them.

But, when Dr. Su-Chun Zhang of the University of Wisconsin, Madison, who has been studying oligodendrocytes and myelination for nearly a quarter-century, tried to apply the culture conditions painstakingly worked out in rodents to human cells, oligodendrocytes failed to emerge.

"When we expand these [rodent] progenitor cells with FGF2 (and another factor called PDGF), these progenitor cells will become oligodendrocytes," Zhang said. But, "What we discovered was that when we did [the experiment] in the same way with human progenitor cells, they were blocked in this process."

By carefully dissecting the molecular events that occur as human ESCs differentiate first into neural stem cells, then neural progenitor cells, then pre-oligodendrocytes, and finally mature oligodendrocytes, Zhang and his team identified the source of the difference: While both rodents and humans control the process with the same regulatory circuitry and use the same molecules (including both FGF2 and SHH), FGF2 behaves differently in each species.

In mice, FGF2 promotes oligodendrocyte maturation; in humans, it inhibits the process.

"This finding is actually quite significant scientifically," said Zhang, "because even [though] the transcriptional network is more or less the same, yet they respond to the same factor in an opposite way. To me, that's quite extraordinary."

Once that simple fact was understood, the experiment could be tweaked so that human embryonic stem cells could, in fact, generate oligodendrocytes.

The study, said Coetzee, "just reinforces the absolute importance of being able to do some of this very fundamental biology and fundamental understanding of what human cells do, before you start experimenting with them to put them into people."

Dr. William Sheremata is professor of neurology at the University of Miami Miller School of Medicine. He sees many MS patients in his practice and called the study "an excellent example of work that is very carefully done by an expert group of people who really know what they are doing. So I think that the conclusion that FGF2 does not work to facilitate maturation of pre-oligodendrocytes is acceptable at face value. It is the first paper that has stated just that."

Sheremata questioned the therapeutic implications of the report, however, suggesting that therapies based on "autologous stem cells" (adult stem cells) were more likely to bear fruit.

Coetzee, though, called the findings "absolutely critical" to moving toward clinical applications for MS, whether directly by injection of mature oligodendrocytes or more primitive precursor cells, because it both enables researchers to grow large quantities of these cells and to molecularly define the process by which that happens.

"This actually begins to lay the foundation for envisioning having the ability to create the mass quantities of stem cells that you'd need in order to have a therapeutic application in MS," he said.

(courtesy of Medline Plus)