[Annie59]

Cant write much tonight but wanted to check in. I am in alot of pain above the shoulders from the myositis.

If nothing more comes out of this I get the vit D-IV fluid experiment that my Endo said was fine but internist nixed at the university. This was after more discussion on vitamin D deficiency affecting me. Talked about how if I could stop tanning I would be better in the winter cause I respond so well to the cold and get alot better until I start to tan. Of course tho if I dont tan I get to January and start to get weaker from the low low vit D level from no sun. So I had explain, attempt to, what taking vit D by mouth does to me and that no amount of vit D food makes me better. My body just doesnt do well with vit D. I told him I cant drink enough water to counter the severe dryness in every mucus membrane, eyes , mouth , nose, lungs that D causes. I said it makes me weaker too cause I get THAT dry. I cant clinicaly say I get dehydrated but I guess we will find out with the experiment as he wants me to take the BIG green presciption pills for D, 25K, 50K pills cant remember. Last time I tried only 200 affected me badly. But prior to the pill he has ordered IV fluid 'bolus' at the outpatient area of the hosp. He wants me to do this once a week.

Annie59

[AnnieB3]

Annie, I remain confused and I kind of understand why you are not getting good responses by doctors. You need to go to the right doctor to help you with a particular issue.

First of all, an internist is the doctor to go to for a vitamin D issue, not a neurologist. Neurologists deal with anything having to do with the brain, spine, muscles and nerves. An endocrinologist can help you with a vitamin D deficiency but usually only as it relates to an endocrine issue.

Myositis is a systemic disease and is usually handled by a rheumatologist. Have you been diagnosed with some kind of myositis? Polymyositis? Some neuros do diagnose and treat myositis but it is an inflammatory disorder and is best treated by rheumys who are experts at those disorders.

If you have Sjogren's, then that is what is causing all the dryness of mucous membranes and associated symptoms, not a vitamin D deficiency. Talking about the vitamin D deficiency is confusing other health issues. A vitamin D deficiency is not caused by the drying up of mucous membranes but by not enough sun, inability to convert to D, parathyroid disease, etc.

I would highly recommend, again, that you see a rheumatologist to determine if you have myositis, what symptoms are associated with it and what treatments you can have. I also highly recommend that you get tested for lupus by a rheumy.

So there was no mention of MG, no talk about diagnosing it or doing a SFEMG or any other MG testing?

I am trying to help you to understand that who you go to and what you say to them affects the care you receive. No, you aren't to blame for doctors treating you poorly but it doesn't sound like you got anywhere of significance today. Unless you did but were too tired to write about it.

Inflammatory disorders do cause significant pain. MG does not. Since you are in a lot of pain, chances are you do have some kind of "itis" and need help from a rheumatologist.

Has anyone even tried to figure out WHY you have a persistent vitamin D deficiency? That would be an internist's job. Has anyone checked your liver function? Cholesterol levels? An endocrinologist can determine if your parathryoid has a problem. They can also do a metabolic panel to check your electrolytes, kidney and liver function, etc.

I simply want you to get the right help with the right doctor. And it doesn't sound like that is happening. It only confuses the issue when you go to a neurologist, for example, and discuss vitamin D. You need a variety of doctors right now to help you but you have to keep the discussion relevant with each one.

I hope you will line up some appointments and get more specific help for yourself.

Annie

[Annie59]

Annie, the short answer is that this guy did a 2 hour appointment with me as I new patient and it was very indepth as this is who he is a doc. I did have to just give a piece of what happened as it is a whole lot to digest and I need time to do that. I am happy about him doing this IV fluid thing when it was agreed to at the university by my Endo there but my internist who had stepped back to be a panel for a few months and stuck me with a student who mucked up the issue stopped. This dryness isnt all about the Sjogrens. Sure those tissues I mentioned are related to that. I have dealt with it for over 10 years and was diagnosed in 2006 with it. There is another issue with fluids that is not yet diagnosed that hits me hard when a drug that says it needs you drink enough water or give you dry mouth is taken. An example is Kdur a potassium drug. It says be sure to drink enough water. I called the pharmacist and said why. He asked me my age and said no worries that was just for elderly whose bodies have issues. I took one dose and in a few hours couldnt walk and got up to go to sink for water for how dry I was I fainted. It took me 12 hours of pushing water to get back to normal.

This guy deals with vitamin D deficiency regularly himself so HE made it an issue not me.

The neuro-optho dept at the university diagnosed the myositis in my left eye last July. When I couldnt tan anymore outside I was ok for a while there but then I started to show signs of the D getting low and I do get infections when that happens and that is why the myositis returned. I would love to go to a Rheumy for this. The great one I had for my Sjogrens graduated from the university and is in Nebraska now. She found my vit D issue. I was in demerol type pain and she suspected it could be the low D. It was. There is only one practice in my town of Rheumies and if you go to Ratemds and look at this guy you would know why he wasnt my first choice. Last time I needed him I got a very cold "it will take a month to get you in." And I begged and even talked to a nurse. Gettting into the one other guy in that practice is frowned upon here where I live and wouldnt likely be allowed. I considered asking my pcp to try.

With my records in such a state at the university I deeply question that a trip there for this to a rheumy would be taken seriously. Until I got that nice young female doc in that dept I was treated like I wasnt really sick back then. They were out right mean. I totally agree about a rheumy. Got one you can send me?

Tomorrow I am gonna have to take some action as this guy didnt do anything about the myositis. I am going thru too mcuh hydrocodone and even at that the pain is still wearing on me awful. It is from the base of my neck up all thru my head and eye area and down into my cheek on the left now.

I did discover that the eye clinic who called the neuro-optho after I saw them (couple months ago or so) to say I needed to seen left things out of the document. It is not as surprising they did set me up for an appointment for the myositis. A good bit of Time passed me thinking the appointment was being set via them.

I posted the thing about the vit D cause it was good news to me and I wanted to share that place with you all and not just something that didnt work or get thru. It was not at all something I expected or pushed for. Given what I have bee thru this is a big win no matter what the package it came in. And if this mega pill sends me to the ER at least this guy is just around the corner and will take care of me.

Annie59

[AnnieB3]

Annie, There are very good rheumatologists in MN. As for "sending" you one, yeah, right. There must be one where you live that is not in that group. Preferably a woman. You could contact the Lupus Foundation for a recommendation.

Since your pain and your breathing are so bad, I would've though this guy might make some kind of recommendation for those two things.

Your reaction to K-Dur is interesting. But I doubt it's the lack of water that caused you to feel worse. It may be that the drug may not dissolve as well due to a lack of water but I would bet that it was the potassium itself that was the problem. Has someone thoroughly checked out your kidney function?

http://www.drugs.com/k-dur.html

Having ocular myositis is kind of like having ocular MG, the chance of it being only ocular is low. Did that doctor even give you anything for it last summer?

http://www.cybersight.org/bins/volum...=1-351-355-487

Have you been checked for Lyme Disease?

Your doctors are not asking enough questions or doing enough "diagnosing" for you. Why they are being so dismissive is puzzling. I'm glad at least this neuro is willing to help you. That's a great result of your appointment.

I hope you will continue to find doctors to help you.

Annie

[Annie59]

This neuro wanted to peg the face pain as migraine and give me that med. I was holdeing my forehead at times so I get that but then I told him the full extent of the pain in my face and he backed off for now on the migraine med. He got angry that they did no blood work on me to diagnose it. He added this to his blood work. He ordered lots.

So given I know I cant deal with the myositis alone at this point like I did in the summer my daughter and I decided that I would see the pcp that does my acupuncture and get my acupuncture which is over due and have a standard appointment as well about the myositis. This fella is not my regular pcp I discuss here. He is a very kind man and has helped me alot with the acupuncture but I am embarrassed that I have trouble understanding his thick oriental accent.

In the mean time I started the steroid eye drop I have for my eye inflammation from Sjogrens/dry eye. The blepharitis has been alot worse with this. The pain went down some after starting this.

I noticed that in the sheet for blood work he has a diagnosis of Lyme disease and listed a lyme blood test. He asked if I had ever had a tick in me good. I said yes when I was a little girl on a fishing trip with granparents in backwoods.

I am kinda burned out on doctors more than even before. I am not sure why I was able to retain the hope and faith I had for a new doc and docs I had before. This last appointment could really really help if this vit D and fluids thing works out as it is a huge problem and it does make me weaker in itself. But beyond that there was alot of bad that has me down all over again. I admit tho on steroids I do go into a down place to it is probably both.

Annie59

[DesertFlower]

I hope the bloodwork comes back with some results that are helpful to you.

I understand getting burnt out with doctors, I've felt like that many times.

Thinking of you.

[Annie59]

A little more on the doctor appointment. Maybe if I write a little about it I will feel better tomorrow.

He ended up prescibing me verapamil to counter the intestinal side effects from mestinon. I looked it up and dont think he got what I was saying about grastrointestinal effects. When I saw it is sometimes used for migraines I wondered if he was still trying to sneak in a migrain med.

He also prescribed me pilocarpine drops and said to made a mouth wash of it to get my saliva back. The last pill was the prescription vit D of 50,000 iu. He wrote and order for IV fluids to be done weekly for 3 months with a blood tests to be done before each one. I am supposed to take 50,000 iu pill right after this. But four of those a month sounds like alot. Maybe I need to see if this is what he intended. Oh wait the presciption my daughter is getting filled would say.

There is a pretty big list of blood tests. One I looked up today and noticed one of the things it can reveal I was diagnosed with at Mayo. Polyclonal gammopathy. The only reason I know this is because I got the records. The neuro who admitted me for MG did this test and it was negative in July of 08. I tried to ask my internist about the relevance but was pooh poohed.

Intensely tired today so eyes are giving out. I will list the blood stuff later. I requested a copy sent to me of the blood results as I dont see him for 3 weeks again. He wanted 2 but I cant do all this stuff in 2 weeks. And next week I have to protect and so little so I get to my granddaughters birthday party.

Annie59

Originally Posted by DesertFlower

I hope the bloodwork comes back with some results that are helpful to you.

I understand getting burnt out with doctors, I've felt like that many times.

Thinking of you.

[suev]

Lots of people have polyclonal gammopathy in their blood work and most of the time it doesn't mean much (according to the hemotogist my neuro referred me to because it showed up in my blood work). That was two years ago - and nothing other than the ordinary MG stuff has bothered me in all that time.

It sounds like this doc is trying to begin with the clean slate that you wished for. Perhaps you should trust him, follow his lead, and refrain from telling him about what has (or has not) happened with other docs. Give him a chance to work with that clean slate - without clouding his assessment with your input about past tests/docs, etc.

Once he has finished his testing / evaluations and appraised you of his conclusions and diagnosis -- then that would be the time to compare and contrast past medical findings with the present ones.

Give this guy a reasonable chance before trying to educate him about how he is wrong.

[alice md]

Dear Annie,

sometimes, after we have had multiple disappointments and traumatic experiences, we lose sight and it is hard for us to look with new eyes at what is in front of us.

It's like a girl who has been raped, finds it hard to trust other men.

But, we punish ourselves twice and deprive ourselves of good and healthy relationships if we do that. This girl, if she lets herself trust people again, can meet a wonderful and caring man, who will become her husband and father of her children.

Likewise, not all physicians are like the ones you have met. Many are wonderful caring people, who truly want to do their best so that their patients will have the longest and best possible life.

I think from what you wrote about this doctor, that he is excellent. He did not "blow you off" , despite a very complicated clinical picture, and numerous previous encounters with physicians who did not seem to find an edge of a rope. He seems to at least try to pick up and put together pieces of the puzzle and at the same time provide you with some form of symptomatic treatment, according to what you told him has helped.

He probably did not understand every aspect of your illness in this one meeting, and if he is indeed a good and caring physician as he sounds, he will continue to think about you, and address all those issues with time, possibly consulting other colleagues, such as your pulmonologist.

The fact that he wants to see you in two weeks shows that he understands the urgency of your situation, and wants to get to the bottom of this and provide proper help as soon as possible.

There are many areas in medicine that are "uncharted seas". Because modern medicine with all its achievements has not seen everything and can't explain everything. If this was not the case, we could diagnose and cure everyone and live forever and there would be no place for any further research, development of better diagnostic tests and better management approaches in a variety of diseases.

physicians (and patients) approach those areas in different ways-

among physicians-

there will be those that will just sail away and leave you there in uncharted waters, many times telling you that those are just "imaginary" waves that make you feel you are about to drown;

those that will insist on using wrong charts that will lead to your crashing against the icebergs and sinking like titanic many times blaming you for crashing like that!

and those that will try, together with you to find the proper charts, taking every effort to understand, looking at every seemingly unimportant detail, and even seeing this as an opportunity to gain a better understanding of this illness. This approach requires a lot of patience from physicians and patient alike and may involve quite a bit of trial and error. nearly crashing, but changing direction on time. it requires mutual trust and respect. it requires a true understanding of the limitations of medicine by both.

Patients too have different approaches-

There will be those that will blame their physician for not having the proper charts, and keep on searching for one that does. (when in fact none exists).

There will be those that will force their physicians to sail in a certain direction because they are convinced they know the charts much better, and many of them will eventually find someone who couldn't care less and do what they ask for, even if he/she does not think it is in their best interest.

There are those that will look for someone to be their true partner, help them gradually find the best approach to sail those seas, be ready for the trial and error involved in the process. be ready to turn around and think together of an alternative route that can lead somewhere. be ready to stop for a while in a small island, before embarking again on the journey to get to a safe shore, and be ready to understand that possibly they will never find the way, but at least some one will do their best so that they don't drown.

Only a physician and a patient who are ready to explore together, stand a chance to succeed.

alice

[Annie59]

So eloquent Alice.

Suev, limiting him to past records is a ship that has sailed as he went into this 'kinda odd smile' and said he wanted the university records. My heart sank. I said I wanted fresh eyes but it didnt deter him. I am very very disappointed in myself that I didnt think to at least specify the release to neuros and Endo (he asked why I hadnt brought vit D results) and date it to go back 2 years. After 2 hours at least I wasnt thinking anymore and was just 'doing as I was told' so I wouldnt lose him or make him mad. He wanted to discuss what my conserns were about him seeing them all. My daughter and I both hit a couple of areas but not alot of detail. The possible worst piece is that he said he really likes the last neuro I saw. I have her report but have not read it. I cant take it right now.

I know the appointment went badly from a number of angles. I was hyper because I had started the steroids. The tone under which I responded to him at one point was likely worse than the content.

I am grateful today for being in less pain. I hope I survive this vitamin D mega dose without ending up in the hospital. It it goes well there will be much fuel for a better year irregardless of why I am sick.

Annie59