Showing posts with label Neurologist. Show all posts
Showing posts with label Neurologist. Show all posts

Wednesday, June 25, 2014

Border for Illness? Researchers for Chronic Illnesses, Autoimmune Diseases Connected in many Ways?, Lupus, RA, Sjogren's - How Many are you diagnosed with?

I post this morning getting off the "days gone by" and back to the medical world at at hand. This particular post came on one of my Med Page Today's News letter I get daily. It caught my eye for several reasons. First of all, this particular "illness" can be caused by being in water that carries it, dogs can carry it, rodents, which means larger cities with people that live on the streets could be more prone to it etc. But, in everyday life we, meaning any of us could come in contact with it. I young boy came in contact with it after being in another country, and he got ill after returning home. He was in and out of the hospital with what seemed to be aches and pains, stomach upset, and almost like flu symptoms. But, after researching his travels of latest they were able to put together the child had contracted  (leptospirosis) http://www.medpagetoday.com/Neurology/GeneralNeurology/46185...

Some of these types of illnesses are difficult to detect if they right questions are not asked, and now I have noticed more and more doctors asking me if I had been on a plane lately, traveled to another region overseas, been anywhere out of my normal home life anywhere, where you can pick up some of these illnesses. Not that they are not only there, just like this one, dogs can have and carry it, but it is more likely to be a more aggressive strain that your body may not be able to fight off unless you tell your physician right away following a trip to somewhere you have been, then suddenly you come down with symptoms of illness. Even around our world today, it seems Polio, which I can barely believe is back on the playing field of illnesses, and with a rampant rage from what I have read. I honestly thought polio was another one of those illnesses like "small pox" that had been eradicated from the world. Yet here were are with Polio showing up and in a good number since at one time we had cases almost down to nothing.

I've never had the pleasure of going anywhere out of the United States for any type of trip. So, I do know about all of the "standard" inoculations you must take in order to go to certain countries and so forth. These are due to coming in contact with some illnesses that may not be here, but they still exist in other parts of the world. Which leads me to the question... we are growing daily in to a "smaller world"... before you can type this out everyone all over the globe can be reading this in just about any country, any nation, any household, within the "hit" of enter on the key board. Thus it is no wonder why so many of these diseases we once considered gone from out nation and possibly world for good, are alive and thriving in the country you are flying to, or even the person you are sitting by could be carrying that illness that might be able to get on board your track or any numbers of illnesses such as these, that we don't often think even exist in in the USA, but could lurk in the very person sitting next to you. As highly intelligent as we are here in the USA, along with the brilliant researchers in the UK, China, some places such as India, we have the smartest doctors, researchers, fellow medical personnel that have ever been. But, our "diseases" seem to be getting a bit smarter also. Autoimmune Illnesses such as RA, Lupus, Sjogrens, MS, Still's disease, Diabetes 2, Myasthernia Gravis, Pernicious Anemia, .... others osteoporosis, FM, CFS/ME.. just a very few of the hundreds and hundreds of chronic illnesses people in our nation as well as all over the world live with, we are as in much deserving of the best treatments, the latest researchers, medications, testing, and all that has been found out by those that use their entire lives dedicated to finding a "reason" for these, finding a way to put them into "remission", medications to help with all of the side effects and other growing number of illnesses that "stem off" from Lupus, and such. More and more we find out due to this "pattern" of the World Wide Web, that at our fingertips, we can "see" how many other have all of a sudden come down with similar side "illnesses" - more like a Secondary to the first one, and often with very similar symptoms. RA and Lupus seem to run hand in hand... along with those I see that Sjogren's, Raynaud's, Vasculitis of sorts, Shingles, Heart Problems, Kidney problems, Liver issues... all almost seem to run neck and neck with what your were initially diagnosed with. It is overwhelming when you begin to research your own "symptoms" and diagnosis, that physicians give you. There is such an evolving realm of the latest and the greatest, of cures, of things to "explain" how Lupus or RA maybe genetic, or how CFS may come from this viral syndrome, or your teeth are falling out simply because with Sjogren's, they literally "rot" from the inside out, not like regular dental caries do. When you went to the dentist as a child, if you went, yo may have had the dentist find a small "cavity" a spot that was starting to become soft and weak, more or less "rotten" as I would call it, but it was "seen" from the outside of the tooth, then usually confirmed by one of the old fashioned cardboard mouth cutting X-rays they put in your mouth, aimed the machine at it, and then had to wait to see how it would look. Of course now it is as simple as holding a small "stick" in your hand, they put a small "digital" X-ray machine up there and they can snap away and get as many as they need. My latest adventure was the "panoramic" one. When that machine began to go all the way around my head, encircling it... and then immediately, I SAW every ROTTEN tooth in my mouth  almost fainted. The difference, these teeth "never" showed signs of issues. I never had a spot that hurt or turned dark, I never felt I needed to go to the dentist honestly, and after not having dental insurance for a long time as long as I brushed, flossed and took care of the, I thought I was "safe" as far as my teeth went. Then wholly cow a year ago, I huge piece of a back tooth broke off while I was eating something, and it was something soft.. Well before I could even get to the dentist another one did the same. I was wondering where all of a sudden this was coming from. I did know that "Sjogren's" could cause dry mouth, dry eyes, and was a pain when it came to those things. But not one of my doctors including ANY of the Rheumatologists, EVER informed me about the very "HORRIBLE" issues of Sjogren's...  Now here I am at 54 years old, of course IF I felt like fighting my health insurance com[any, I may get 60 percent of the $8,000.00! bill paid! But, while I am bickering with them, I am losing more teeth, which means more bone loss daily, which means a possibility of the implants or not wanting to fuse into the jaw bone properly... and you know where I am going..
So, who has "estimates" of $15,000.00 %$23,000.00 or even $8,000.00 lying around to give their dentist? I venture to say NOT MANY! Don't get me wrong, many of us probably have the "credit line" on a card or two in order to come up with $8,000.00. But, I mean "clear no interest cash payment", so when you walk out with all of your new and beautiful teeth, you do not owe on them until your are 95 years old!
I had and have choices to make. I could have "tried" to fight like hell against "Humana" and gotten a possible 60% (by the way even IF THE DOCTOR IS ON their PLAN) they still ONLY PAY 60% and not a penny more, even though this is caused from a medical problem. So, I would have still owed 40% of a bill that in Dallas at any of the larger Oral/Max Surgeons, would have been three times what the other 3 "estimates" were. So, I would have been well away, further from my dentist if I happen to come down with an infection or dry socket in the middle of the night or needed something on the weekend. You can BET there is NO WAY any of those in Dallas would come in, open up after hours... but they would tell you to either call this or that number, OR go to ER! Like the ER is going to do a damned thing about a tooth infection or a dry socket. Where, here my dentist is about 2 minutes away, 5 or 6 "small" city blocks and I bet if a dry socket or infection appears at night, after hours or on a weekend etc... HE DOES open the door to come in and fix it! Then I faced the fact that NOT one soul I know could drive me back and forth to Dallas right now. If I had any type of anesthesia (and believe me this time on Friday, I am asking him to "turn up" the gas) ... they were having heck getting the nose piece to stay where it neded it to be and I was not getting any of the medication I don't think... it never felt any different and I was not more relaxed as I usually am if they used the "laughing gas"... so Friday when he pulls SIX TEETH, I will make very sure I am "feeling some effects" from the has first. In fact I am looking that puppy up today to see how they determine how much and if you can ask them to "turn it up".... ;)




So, right about now you are asking yourself, what subject is this woman on today? illnesses" that come from other country's?, the many different realms of how autoimmune illnesses can turn from having one to several, how we need more informed physicians on these illnesses that will TELL US that SJOGREN"S is ROTTING YOUR TEETH PROBABLY, but we need to look with an X-ray because they are not "regular cavities" ???? or... How OUR world gets smaller, our diseases worse and spreading violently, how the USA does not care about "our healthy" BUT the CONGRESS SURE gives a darned about how much "medications, research, and pharmaceutical companies line their pockets?... Well, if you said ALL OF THEM! YOU get the prize... to me in one way or the other ALL is connected... we have illnesses that don't really "come" from here... but certainly"get here" rapidly from planes and ships, or not just people but animals, foods, anything shipped here from another country could have the capacity to make us "ill".. with one thing or the other... and every time I was an apple, or melon or a watermelon, banana, peach... you name it, I fear I am bruising it due to how hardly I am scrubbing.. like a child with dirt behind their ears ... trying to get every little germ off before I dry it off.
It is to the point we are inundated with worries about "germs", Illnesses, diseases, and all of the viral abundance of things out there that can make you a tad ill to those that can put you into the ICU for weeks on machines to keep your heart beating and your lungs breathing.

I am NOT downing the place our medical world is taking and has taken us. But, at times we have become so extremely concerned about the aspects of illness, we have a difficult time trying to enjoy those days we are NOT ILL! Now I know, like myself, any and everyone with a chronic illness, from Autoimmune Illnesses, to CFS, to like Jim as I am learning a (SCI) Spinal Cord Injury, & those that have lost limbs, had to have multiple joint surgeries, this list could go on forever about the about of those of us with some type of "chronic pain and/or issue, either in our own life, or in the life someone you are close to.
I've tried to figure out in my own "tiny small half fogged out brain of mine" why is it we seem to HAVE MORE illnesses... when I was a child I did not know nor hear about ALL of these illnesses, those with chronic pain and suffering, and those that had been harmed in an accident or came down with some "foreign" virus. IF there are more now, why? Well, if my own "stupidity" of a self would think again, as I have said before and will repeat myself again I am most sure ... we have MORE PEOPLE, WE ARE over covered in NEWS happening right then... we are stnading under the helicopters when they are searching for a thief. Or we have someone like Richard Engel that sometimes I wonder about) who seems to love to "dig down in the trenches" literally with those guys and girls over their protecting us... so first hand we see the bombs, the shooting, the massive about of bodies being dragged in a pile to be basically push into a deep pit and covered over. Because there are SO ANY BODIES, THERE is no way they could bury them all. Thus they will later probably build some time of "shrine" on that plot of land so they can "remember" those innocent men, women, and children that died needlessly over a "holy" war! This stupidity over in the Middle East is jut that stupidity. It has nothing to do with the "GOVERNMENT" or politics. Oh they may try and tell us that, but it is a war to help the people and to get back to "democracy" but  it truly is a "HOLD ABOUT GREED, CORRUPTION, & POWER... it is about "one's them "God's beliefs " over how they feel about"
It is NOT that MORE of these types of things are happening. Look back and you can see we got these pieces of information, NOT on an "I-Phone" or Smart Phone. We did not open our I-Pad, Laptop, or run to your desk top to check out what was going on . Thus the "news" was happening all along, we just did not know about it until we heard it on the news channel or happened to see it in our local paper or the Dallas Morning News. If bad weather was coming, of course we were informed as quickly as possible on our local news channels, but sometimes by radio, rather than on the television.
It has not been that many years ago, when "kids" were kids. We rode our bikes, went to school, learning math, reading, and thinking about our next Summer Vacation. Now there are kids that were my age in the 5th, 6th and 7th grades that are bringing loaded guns to school and killing  my fellow class mates. I can't even imagine where I would get an idea like that. I grew up in the 70's listening to the Eagles, Stones, Procol Harum, Fleetwood Mac, naming them from Elvis to Porter Wagoner, and NONE of that music made me want to "harm" myself or my parents, or anyone for that matter. But the point of the matter is, we DID have probably many terrible things going on. We were in wars, like Vietam, and the Korean War, & have since then had to FIGHT to keep our Nation a free nation.

I am not saying that it is a bad thing, but kids now days know MORE about guns, war, fighting, drugs, sex, & just about any other crude, distasteful subject you could dream up to talk to them about, and bet is, many of them would be able to tell you something about every category. IF you asked them where they heard about a particular type of weapon, or some type of drugs out on the street, if they want to, I am quite sure they would say one of the other students, or students parents, or teachers (kids of course sometimes overhear teachers and our) conversations.

There are things to this day, that I would be clueless to talk about when it came to certain subjects, and I know my almost 30 yr old and 35  (I think almost 36) year old could come right out and tell me that had known that for years and years!

Eve though our "time lines" in many ways are somewhat the same.... many of us in our late 40's early 50's like clothes, music, movies, concerts etc just like my 30 and 35 year old does. Then there were MANY differences in how I raised them to think versus how my Dad, wanted my Mom to "teach" me. SHELTERED! Keep the women of the house "dumb" or not as intelligent thus men keep control, and things stay "in harmony".... Sorry Dad, but that was total bull crap!

Not me, I tried my best to teach them what was RIGHT and what was WRONG!, how to treat others, and to get the best education (at that time) that you can or find something in a job you "love", and then hold onto that job. If it is not really quite the right one, that one will appear someday if you are patient. Well guess what... most of the things I taught them "stuck" BUT "patience" is NOT one of them... if they WANT it they want it NOW!!! No saving up, no waiting until we have the money, not giving thought to other things that could effect the bottom line, and yes to this day, I hear it from my daughter quite frequently that they are "talking about" saving up for the house they finally want to build.... BUT the next week they will have a new vehicle or another travel trailer when the huge hail storm beat it to pieces down by the Frio River this last before before when they had the BASEBALL sized hail!!!

Okay, after taking the VERY LONG ROUTE to get to my point, is exactly what my point is. As "technologically intelligent" as we are, the things we NEED to accomplish are mind boggling and astronomical. I know with the highly educated, and some of the best genius' that have ever been on this planet, someday, someday, they SHALL bring US the LIGHT! It will "turn onto" a whole new way of treating illnesses for all. It will be something that will totally change Medical Science and send the "older doctors" packing because it shall be that advanced. I honestly have no doubts in that. OF course it is NOT going to happen "overnight", in a decade. or whatever kind of "number" you want to calculate it to.

The ONE THING that SHALL REMAIN CONSTANT throughout ALL OF THIS NEW ADVANCEMENT and what shall NEVER change... and that is "US". WE the volunteers, the advocacy people, the Ambassadors, the Activists... our VOICES MUST remain the one CONSTANT now, and forever until eternity. We are an integral part of what MAKES Laws come from being a "thought" to ACTION! We are the voices that ring out on Capitol Hill with groups such as Arthritis Foundation, IFAA, WEGO, The Lupus Foundation... and SO MANY MORE there are too many to truly name... and within the "cyber walls" that bind us ideas ""give birth".... and they teeter and totter just like a toddler as well make way for bigger and better place to go. And as we Watch that "one small idea" become living and helping out those who need it so desperately... we can thank one another and our own selves for the tireless, no pay, volunteer, hours for making that become what it is today.

So, as I cover many things in this post... I hope you pick up something that gives you a 'light" tonight to take with you... and make your own idea "be born".....


Here is the link what began my "brain" power and thoughts or what is left of my brain... what is left and that is not of too blogged to write the above...

http://www.medpagetoday.com/Neurology/GeneralNeurology/46185

Saturday, April 19, 2014

Just a Quick Post and I will promise to post more tomorrow....

I've been going back and forth over my "eye" stuff. The double Vision. It has progressed and gotten much worse. Sometimes even now, with my glasses on, it rears its ugly head.

Since everything has happened as it has I already missed my Rituxan infusion and have to reschedule it, my new dentist who also works out of the same facility SW Med, in Dallas, and I am in desperate need of both of those. Plus I feel i may need to see the eye specialist again but I am not sure there is anything else to be done about it,,

I've narrowed the entire issue down to two "diagnosis"
First of all "retinal vasculitis" and moreover all of it definitely lines up as symptoms of Myasthenia Gravis. In fact "MS" and also Myasthenia Gravis came up at one of the last Neurologists I went to. He said it is also difficult to really "diagnose", due to like many of the other autoimmune diseases, there is no "one" test that tells them yes or no. There are a couple of blood tests out there, but just like RA, Lupus and the rest of them... they could be "serum negative" but you have it or be "serum positive" and not.... thus counting on tests right now is usually nuts...

But, my symptoms just tell the story and map out each and every way the symptoms go... so I am including a couple of articles about these, and I plan on doing more research myself. If any of you find something or come across some good information I would so appreciate it if you would post links here etc...

http://www.ncbi.nlm.nih.gov/pubmed/11257479

http://www.aao.org/publications/eyenet/200607/neuro.cfm

There are lots of good links out there with information so if you fall upon anything that mentions this, as well as anything that might help with Jim's recovery from the accident and trying to learn to walk again... any and all is so needed and appreciated..... Rhia

Wednesday, December 11, 2013

A Beautiful Bracelet & The Lady Behind the Incredible International Autoimmune Arthritis Foundation

How ONE Person Can Take something out of "nothing" and turn it into An Amazing Foundation For those Suffering from Autoimmune Arthritic Illnesses.







... everyone--- this bracelet signifies so VERY much to those of all who suffer from the infliction of autoimmune arthritic diseases... And this dear woman that makes them by hand each one has brought so much HOPE to so many people AROUND THE GLOBE!!! I am absolutely so proud to tell everyone that I am an "Active Volunteer" for the IFAA!!! And I could not ask for more.... Rhia I will also get this posted on my blog.






I wanted to match the "reasoning" behind the bracelet and what it stand for. First of all Ifaa Tiffany Westrich-Robertson makes each and every one of them by hand. this is the way she made the very first one, thus the "Buckle Me Up Movement" began. She still continues to make them special order by hand. So, If you are wondering "why the beads" and what this stand for in it's entirety here goes. "The 3 silver beads and 3 black beads represent all people working together to make a difference. Red is the color of strength and signifies the strength we all achieve in numbers. The final silver bead symbolizes moving forward to find more and more people to join the movement to raise a global awareness about Autoimmune Arthritis."
-This explanation is packaged with each bracelet.



Also there is a "story" behind the entire background of how this bracelet was initiated by the "Buckle Me Up" Movement. From there it has transitioned twice, first to IAAM (International Autoimmune Arthritis Movement" to evolved almost like a butterfly in a cocoon to something incredible which is now a "fully Non-profited Organization known as the "International Foundation of Autoimmune Arthritis".. So through it's "growing" spurts to become a group of people so incredible is remarkable and so is the story behind it. Thus it began by a thought and a bracelet just like this one. When they were still (IAAM) that also have a beautiful motto behind that too:

( The 3 silver beads and 3 black beads represent all people working together to make a
 difference. Red is the color of strength and signifies the strength we all achieve in numbers. The final silver bead symbolizes moving forward to find more and more people to join the movement to raise a global awareness about Autoimmune Arthritis IAAM, sounded out, is "I Am". While we have change our DBA (doing business as) name to the International Foundation for Autoimmune Arthritis (due to the addition of research to our scope), the awareness portion of this organization is still a "Movement" of awareness. Therefore, the IAAM is on the awareness bracelets. In addition, the "Buckle Me Up!" Movement is written inside to remind each person who wears it where this all began and how far we've come as a community.

Our Message for this Autoimmune Arthritis Awareness bracelet focuses on this statement. Each bracelet is packaged with the Message below:

"I Am...
A Leader for Change,
Hopeful,
A Believer in Progress,
And Rebranding Stereotypes.
I Am an Advocate for
Autoimmune Arthritis Awareness." )



(The portions in the () are directly from International Foundation for Autoimmune Arthritis URL: http://ifautoimmunearthritis.org and you can also see their Facebook page at: International Foundation for Autoimmune Arthritis

For myself, this is the perfect opportunity to also tell why this Foundation absolutely means so very much to me. The founder Ifaa Tiffany Westrich-Robertson and her story that she has about how long she suffered well before FINALLY getting a physician that KNEW something diagnosed her, reminds me so much of myself. I also trudged along for years (like many of you) to get "misdiagnosed" with everything from "soup to nuts" as the saying goes. So, after she finally had a grip on the real reasoning behind her years of symptoms, then she knew there was a very strong need in our nation and in fact our world, of getting this out there to say "Hey Wake Up" to doctors, the medical researchers, patients and caretakers, families!!! It was TIME to do something! But what? As myself, I am but one person. I am "limited" in many ways to "get my point across to the many, many people out there that I don't have a way to fully open the doors to a grand eye opening "movement" of sorts. Yet she was able to take something so very simple, and create it, put her story and her whole reasoning for the bracelet online on the right place at the right time... and from the 1st moment of "but one" person, became thousands around the world!!!! So as I said above, I have always wanted to be able to shout out to everyone that will listen, and "heed" what I say to "DO SOMETHING" I feel "my voice" through her own battles has truly been spoken to whom I've always wanted it to. Now at the right time, and in the right place, I've been added to the glorious "fold" of men and women who share a strong desire to make all of this happen, larger, more verbally, online to potentially millions of people, that we need CHANGE> Change that means a "Quicker recognition of "symptoms" by health professionals, A Quicker diagnosis so people can "delay" or even "stop" damage of the joints and the body before it takes its toll", "Quicker medications, that take these illnesses and "kick" them out of the body, or halt them in a way that "remission" and possible wellness are something that can be achieved. and Last but not least "A Quicker, stronger, verbal, out reaching message to researchers, to those who can donate their time, or funds and help a cause have those researchers WANT to study these diseases, illnesses and syndromes to perhaps even "heal" us "before" we even know we are ill. Everything above I've said I feel a strong conviction that through the IFAA, it's Founders, and all of its Volunteers, all and more of these things will be achieved!!!!! I hope you take some time to go to their Website, go to their Face book page, ask me questions for now I am a piece of their "pie" as an Active Volunteer, and go to my own blog. I will be putting up this information, and I blog quite frequently about this group! 

Thursday, December 5, 2013

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. :)



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