Annie, I was wondering something. Do you have any areas on your skin that look like they are "hardening?" Like your legs or hands or neck/face? I'm still thinking that you have some sort of rheumatology condition that is going undiagnosed. I wanted to urge you to try to find a rheumatologist that could help you. I can't shake the feeling that something is being missed and had to say so.

I hope you are doing okay.

Annie

Well, I guess you must not be feeling well enough to respond. I hope you are feeling better soon.

AnnieB3, the flu took me down hard. Sorry I didnt get answered. On top of that I have this housing recert that is coming differnent than before. The expect me to do the detailed paper work on uncovered medical Yplus 6pt forms and for the other person all teh cleaning to get my place inspected!! Then this morn just now the home aid agecny nurse (4th one since October) called to say she HAS to come this week for their recert and sounded snippy when I said I was getting over the flu and had housing due this week. I said call my daughter and she said ok as if that will do her any good! I got 'the tone ' from her. She didnt have that tone last time when she called from her car and didnt know my case yet. Not good.

No skin stuff like you noted. I do now have a rash under my breast from some or all the meds I am on. I had an odd case of chilblains when this was all early on. It was my foot and they said you must have been out in the cold. I said no but they didnt believe it. The dermo they referred me to did an ANA which came back negative but I have had postive ANA and the speckle test came back positive at that time which came back again later in 06 with the Sjogrens blood work that was positive.

I feel like I am a broken record here but because I got dehydratd from the flu my dry eye is even more intense and that with less mesti cause tummy is so raw my eyes have reached a new low so I hate that I cant spend as much time online or here.

Annie59

Annie, forgot to respond to Rheumy issue. I would have seen one by now. I just started to cry on the phone to my friend who I havent seen in years that I am scared of the myositis thing. I think it is real and affecting my body alot. Just stopping the steroids for those few days(the flu I discusssed) ended up with me back in pain yesterday in places I didnt even know were involved like my whole left leg. I had a good rheumy in 2007, the student that was in her last year that bucked her senior docs that didnt treat me well. She tested me for vit D def for the pain was in and was right. I wwrote her a big thank you letter and we bacame good mates. She is gone to Nebraska.

Since Mayo questioned my Sjogrens I havent seen a Rheumy as well all the breathing and muslces weakness was the most urgent. And once the mestinon was starting and all that saliva, fluid increase mestinon gives took care of Sjogrens symtpoms strongly. I had had an appointment with an older kinder rheumy per my request to my internist before Mayo but that person has retired. There is so much ill will towards me there at the university I dont know if any doc there will take anything I say as real. They sure didnt in the last neuro when I told the student there I had pain I felt could be related in my thigh to myositis as the pain got better at the same time. Also with them in the neuro-optho not taking any action at all on the request of my surgeon to see me for my eyes so I can have surgery for cataract to clear up the myositis and see why they still arent moving right ...cant see anything being done there. I dont know who would do that fight. It is beyond me.

Can you imagine how it hurts me to be so unbelieved as someone who went thru a trauma? Someone who the truth is everything to?

Annie59

Yes, I can imagine.

But, you have to understand that it is not you they don't believe. what they find hard to believe is that rare is not impossible and unusual can exist. and that patients are not "boxes" but complex human beings.

It has nothing to do with you. It has to do with them being unable to think out of the box. with them using their disbelief as a way of hiding their ignorance and arrogance. hiding their fear from facing the unknown and their limitations as the well as the limitations of their profession.

The only thing you can do, is try to diminish as much as possible your emotional response to all of this. As it can only serve as fuel for their fire, as proof for their unsubstantiated ideas.

I have found quite a few times (as ridiculous as it may seem) that physicians could understand my emotional response to my illness, but not my emotional response to their behavior (which was sometimes as bad as the illness itself).

But, this is mostly because they truly have no insight into what they are doing. They think they are honest when they are deceptive. they think they are compassionate when they are actually being paternalistic. they think they address your fear and concerns, when they don't even listen to what they are. They think they have done enough for you, when they convinced you to trust them and receive treatment, and they don't think they have any responsibility for the consequences of this treatment. they are sure they did good when in fact they did much more harm.

So, its not you they don't trust, but themselves and their ability to see what is in front of their eyes, and trust their senses, without the need for unreasonable explanations for what they can't understand. They don't trust themselves to stand in front of the mirror and see who they really are without all the covers they put on themselves-their title, their so-called experience and knowledge, the artificial pedestals that put them way above their "patients"-the people that come to them for help and they automatically assume can have no insight or understanding to what they experience on a daily basis.

And you just have to keep on searching until you find those that aren't like that.

Thank you Alice. I have been trying to see why my oldest daughter can't find her way to be strong and assertive with these doctors. I finally came out and asked her just recently why she doesnt just jump in like my sister does with our mom. She said she cant. Thats not her. She is so so strong in the work place. Both of my girls are. They have very powerful jobs. My youngest who is so fightened I may die leading her to be in massive denial had to work the weekend for her job at Rockwell International regarding problems with the Tsunami. How can I harness that strenght? I have tried so many ways.

They are young enough that they for to long yielded to the science of the doctors who wanted a black and white test. Tho after my crisis they did the research and expected the docs would have me for a thymectomy and I'd be myself. When things dragged on and I was left with only mestinon and so so disabled it didnt make sense. To them being sure equals action and if the docs werent doing this stuff then something was hinky so their doubts came on. They still have too much blind respect for any doctor. My oldest has actually shushed me in the doctors office when I try to straighten something out!

Their kids are so young and they both have consuming jobs. Neither has the time to really focus on what is going on totally as it is so multi-facted at this point with MG symptoms and myositis and my eyes that are affected by both in my mind and in the symptoms I see and experience. It is hard for my to just figure out and report on much less for them to take in.

My day dream is that all that vit D mega doses would heal the myositis and get me in better shape somewhat and enough to have some quality of life back. But now I think the myositis is beyond that. There are only 3 rheumies here in my town. One sees no new patients. The out of the other 2 one I saw years ago. He was not very good as I noted here once. I found reviews on him that said things far worse than my thoguht. The remaining one I actually asked my family if he could get me into him in our last talk by phone on the myositis issue. He said no he was too busy. Nice huh! But he is a big university man as he graduated there. He treats me minimally and has all the doubt stuff on anything complex. He has this thing he says now when I bring up something that I know is a hard one like the myositis he says "well I have over 3000 patients and I have never seen it...."

Annie59

I really love that "I have never seen it".

one of the leading experts I have seen ( a very nice compassionate physician with truly excellent bed-side manners) told me that he has seen more then 800 MG patients and has never seen someone like me. so, he is therefore confident I do not have MG.

His explanation was that- My respirator relieves my respiratory symptoms because it is psychologically making me feel better. (obviously this guy has never put a mask on his face). My effort dependent respiratory tests show numbers consistent with respiratory failure (as my local pulmonologist wrote) because I am not putting enough effort in doing them, and it can be very misleading for pulmonologists who do not have expertise in neuromuscular disease (which my pulmonologist doesn't officially have) . It all fit so nicely for him that I really wanted to believe it, and even did for a day or so!

Just to be more confident in what he said, (as my pulmonologist who I regard as an excellent clinician thought very differently, and I found this conflicting information a bit confusing), I asked him if he could refer me to a pulmonologist that does have expertise in neuromuscular diseases.

After getting the results of her tests, and clinical impression, he told me with the same level of confidence that he has no doubt I have MG, with significant involvement of my respiratory muscles and I require treatment as soon as possible. He told me that because of my very unusual course, and normal results of tests he nearly missed this diagnosis, despite his vast knowledge and experience.

To me this just added to my confidence in him, as it showed that he was both open-minded and ready to think out of the box and also admit his mistakes.

When my response to the treatment he gave me was not what he expected (and in fact quite the opposite) he convinced me and himself and that I was in fact in remission, but not "aware of it". and wrongly thought I was doing much worse. ( I later found out that he had results of tests that showed it, but chose to ignore them and put a big ?!, even though they fully supported what I felt and said). He explained to me that as I well know from my own clinic patients and their families have no real insight into their illness (which I didn't know and in fact had many examples for the exact opposite).

He again told me that he is never seen someone like me, and therefore what I am experiencing is "impossible" and due to emotional problems. (by that time I was so desperate from I have gone through, that I can't say I didn't have a pretty severe emotional response to all this, which was ultimate proof for him and his team that this is the reason for what I wrongly thought was a deterioration in my condition).

It took me a few months to get back to my senses and understand that I have to stop taking this treatment ASAP. It took nearly a year until I could finally do that.

Recently another leading expert told me that the adverse response I had to treatment was "impossible" as he has a lot of experience and has never seen something like that. This sentence to me was the best possible warning sign to politely thank him and find someone else ASAP.

I have learned my lesson. physicians that think that what they have not seen can't exist, will not change their way of thinking just because they are proved wrong once. It's not even worth the effort to try and convince them. They will also have no doubt that even though they have never seen a patient like you, they understand your illness and what you are experiencing much better then you do.

when you have a rare illness, that doesn't obey the "rules" you have no choice but to find those physicians that truly understand that even if they are highly experienced what they have not seen can exist, and in fact does.

Sorry, Annie59, I've had a busy time of it lately.

Did you go to the doctor RIGHT AWAY at the sign of the flu? They can give you Tamiflu within 24 hours that should help. You have to start getting to the doctor a lot sooner than you have been.

Do you have the copy of the ANA? If not, get it. ANA's can come and go like that. Just because you had a negative one does not mean it nullifies the positive one!!! Autoimmune diseases fluctuate and antibody levels do too.

You HAVE TO get that rash checked out. Whether it's at a regular doc, urgent care or the ER. Rashes don't happen for no reason. Sure, it could be a fungal rash from heat and moisture under the breast area but it might not be. One thing that will get rid of that particular kind of rash is cornstarch. Yes, cornstarch. It dries up the area and can cool it down, thereby acting as an anti-inflammatory. DO NOT use talcum powder. Breast cancer can have rashes associated with it too.

Mayo questions EVERYTHING they themselves didn't diagnose. Very arrogant. Again, do you have copies of the original Sjogren's diagnosis?

Pain like you have is often an inflammatory condition. Lupus, rheumatoid arthritis and polymyositis are ones I have thought about with you. It is even more important for people with inflammatory conditions to have an "anti-inflammatory" diet. No white food, sugar, etc. Lots of whole grains, fruits and vegies, good omega 3's (like fish oil).

The thing about the cold making you better really makes me think what you have is a rheumatic condition and not MG. No, I'm not doubting you but MG will get worse in COLD temperatures. Cold is often used as an anti-inflammatory so it's more logical that is what's wrong. Plus you have to have pain meds all the time.

This is the thing with doctors who say they aren't taking patients anymore. It's a rule. There are exceptions to any rule. Call their nurse. Talk in very simple terms to them. DO NOT overwhelm them with details over the phone. Simply ask if the rheumatologist would consider seeing you. You'd be amazed at what you can get to happen when you ASK the question.

Myositis will NOT be cleared up with cataract surgery! Who told you that?

Yes, I think many of us know what it's like to be treated with zero respect and treated like we "want" to be sick. I know what it's like to be mistreated due to a doctor's fear of being sued, even though I never even hinted at that. My goal, like yours, was always the truth and getting proper treatment.

It sounds like your daughter who "shushed" you has trouble with conflict. There are some people who are very uncomfortable around those who challenge authority. And a simple question to a doctor can sometimes be seen, especially by the doctor, as questioning their authority. Total poppycock.

Alice is right about doctors. I don't know why they can't trust their instincts. Why they have such a hard time believing in what they SEE.

Annie, the point is to get some help as soon as possible. Inflammatory conditions are very damaging to the body. Inflammation basically destroys the body. So you need help in a lot of areas. Please "work the system" and ask for help. Don't get bogged down in all the details of what is going on with you. Think of it as "dating." You wouldn't dump all of your personal junk on a potential mate at all once. Don't do the same thing to doctors. Just get the date.

I hope you will get some help soon. It's awful what you are going through.

Annie