Post new neuro
 

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

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

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

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

Another doc for the myositis and lots of blood work
 

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

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.:hug:

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

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.

sailing uncharted seas
 

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 :Sinking: 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

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

Annie,

the fact that your doctor asked for your old records does not mean that he will be influenced by them. patient records have data and interpretations. The data is important, the interpretations-well, sometimes you better ignore them.

I highly respect some of my colleagues. this does not mean that I take everything they say or write as the words of god.

A good physician needs to be able to pick up the important details, even if the patient is not "telling" it right. patients are many times under stress, concerned, feel lonely. they don't come for a work interview, they come for help.

I will give you a few examples-

1. a very nice young lady was referred to me by her GP- the reason of the referral was that she was not compliant with her medications. Her cardiologist wrote this in bold letters on her clinic summary.
the first question I asked her was- are you taking your medications as prescribed? and she said-yes, of course. I know it is dangerous for me not to take them. well, your doctor thinks that you don't, what is the reason for that in your opinion? I don't know, she said, I think that my blood tests look as it I don't. I then asked her, if anyone explained to her how this medication works. her answer was no, no one ever did. was she aware of the importance of her dietary habits while taking it? the answer was again-no, she wasn't. To cut a long story short-after we reviewed her diet and adjusted her medications accordingly she is one of my most compliant and well-adjusted patients. she comes from a different ethnic background and therefore it was probably assumed that she will not understand the explanations, and also no one was aware of the fact that her dietary habits may be very different.

2. one of my patients developed post-herpetic neuralgia, which is an extremely painful condition. I gave her pain meds and asked her to call me, so we can increase the dose if required. I also told her that it may take a few days, until we found the optimal dose. she didn't call me, so I assumed all was well, but when I saw her in the clinic a few days later, she came with her son and was crying bitterly. she told me the pain was unbearable and she couldn't stand it any more. the pills I gave her were useless, and she is not going to take them. My explanations that it may be because the dose is too low, made no difference. So, I started thinking of other treatment options. I told her it will take a while, as I have a few patients waiting for me, but will be back within the hour. when I came back with a new prescription I found her cheerfully talking with her son. surprised, I asked the nurse what she gave her, and she said-nothing. I went back to the patient, and asked her if she was having any pain. she said-no, not now its all gone. since when? I asked- since two days ago. then what was wrong with the pills, why did you want to stop taking them if they worked so well? I asked. because, they made me constipated. was her reply. So, this patient mixed it all together-the pain, the side effects of the medication (that helped one thing but caused a new problem), and being generally miserable because she was home alone most of the time, and was feeling so ill.

Patients don't come in nice packages that describe the contents and use directions. They are people. We (physicians) are too. and a physician-patient relationship is first and foremost a relationship between two people.

And as I said before give him (and yourself) a chance.

you may be disappointed, but you may also find out that he is the right physician to take care of you.

Alice, you are such a good doc. Do you think your MG has made you approach medicine differently?

I try to believe there is an opportunity here. I am frustrated that I cant just stop the doctoring and rest and give my burned out daughter a time out. Neither of us are doing well at appointments. I need so many tests. I have been too sick or on the one good day dont have ride. For the stomach pain and diareah I was to have a Ct scan and blood work per my pcp. The blood work only is done. And....bone scan (to see how my bones are continuing to deteriorate- I had to request as this is getting lost in the rest of my health issues I was supposed to be sent back to Endo--this is going on from hyperparathyroid issues from chronic low D)---and the test the ENT ordered a swallow test and an MRI with contrast on my neck (new neuro said he is VERY interested in the outcome of this. I had an outstanding vit D test as the first on my pcp ordered that I requested was ordered as the wrong test. It is now done as the neuro ordered it with his labs.

I dont have the strength to deal with doctors on points of confusion which helps no one and none to try to help my daughters work thru their fears and anger so they can help me more. I asked for a family meeting right after Christmas. Didnt happen. In light of the last disaster appointment at the university (not recent one) my daughter said we have to have one now. In this much pain I am not jumping on that wagon. This stuff is so hard on families. My grandkids miss me so much. I started to cry briefly when I went to this in front of the new doc. My grandkids bring this out everytime. I was very very close to them.

Annie59

Annie,

Dealing with a chronic and demanding illness (even one that is clearly diagnosed) is not easy on the patient or the family. And people respond to this in different ways. Its good if we can find the way to have special good times with our loved ones, even if there are also less good ones. it gives all some new energy to handle the hurdles down the road. I think it is important that you find the time and energy to see your grandchildren at least once in a while. I am sure it will also help you fill your batteries.

As to your question- I believe that when you yourself have to deal with those hardships it makes you understand your patients better, but it is also the other way around, I think that the fact that I was a physician and always listened and learned from my patients helped me deal much better with my own illness. Very soon after I became ill I realized that my white robe does not protect me from physical illness, nor does it protect me from the emotional responses and social and professional consequences of it.

what I found hard to deal with was that I also realized that many physicians (including those that are considered excellent and caring) do not listen to their patients and learn from them, but come to them with the self confidence of dictators knowing what is best for them, or take the opposite approach of taking very little responsibility over their care. Some of whom theoretically fully shared my approach, but in reality were very different then what they preached for.

Alice thanks for this, its made me look at my neuro in a differnent light.
He was always quick to dismiss me, when I collapsed twice, he ignored it saying it was nothing. I struggled on. When I couldn't hold my head up and was in pain and totally messed up emotionally with dealing with a horrid disease in my 30th year, he hospitalised me and said it was depression. I struggled on.
He always says I'm his difficult patient, with all these wierd added symptoms, I'm not a nice normal run of the mill patient, I make him think, my words not his.

Now he is listening, I rang up saying I was muscle fatigued and tired all the time(low iron which is being fixed) he orded ivig and said if this lot worked he will organise a 3 month trial of 6 weekly infusions........at last I think he understands that I know my body well, and much more than he does. He organised all this on his holidays to, I said "thank you so much for doing this on your time off" he acutally sounded embarrased, but I needed him to know how important it was to me.
So it has taken many years of me talking and him dismissing my problems, but I hope really hope I have taught him some things, because it has been a struggle at times. I don't think it should have taken this long, but that is life, no other neuro is close by......
sorry for the ramble, but have needed to get this off my chest for a long while...

I think you did. It sounds like you helped him mature to become a better physician. listening to you, taught him what was not written in his books. taught him the rewards of being a true physician, one who is ready to sail uncharted seas with his patients.

we all start on our first days, fresh from medical school, knowing it all.
we feel very proud of ourselves and saving a few patients lives makes us feel almost like gods.

It takes time to realize we don't. It takes time to understand the importance of learning from and with your patients. It takes time to understand how humble we should be. It takes time to understand the limitations of our knowledge. It takes time...

And not all physicians reach this level of understanding, even after many years and experience.

I am sure some of my first patients feel like you that they have taught me much of what I know. And I am sure they are right.

Most people with Chronic lyme disease are notoriously low in Vitamin D. It also covers a myriad of symptoms. Vitamin D deficiency is so widespread now because people aren't spending as much time outdoors, that is not unusual for any type of doctor to bring it up.

My neuro, who treats me for Chronic Lyme Disease, tests my Vitamin D and it was so low he put me on an isotonic Vitamin D supplement. It was only 7. There have been many articles written lately about the vast number of people with low Vitamin D and the array of symptoms that it causes. It's become a bit of a hot topic lately.

Realized I forgot to post as I said I would the info from the blood work sheet that included a number of tests and on the right a list of diagnoses.

Diagnoses: Lyme disease, deficiency, malaise and fatigue, high risk RX, disorder of Fe metabolism, dysproteinemia, hypothyroid, vitamin D deficiency

Tests: Lyme, Sed Rate plus CRP
B12, CBC, BMP, HFP, Fe, Ferritin, protein, electrophoresis, Free T4 , TSH,
25 OH...(ect) vitamin D test

Annie59

Redtail, Thank you for your moving story. It sounds very familiar in the part about being a diffcult patient that has extra things going on. How did your family respond during the days of such dissmissal by the doc and intense illness for you? I am having a real hard time with my daughter giving up and listening to docs at times. At least this new neuro truly stunned her and taught her something when he so so quickly and readily set up the IV fluids to preceed the mega dose of vitamin D. That whole thing at the university ended in the student doc that worked for my internist taking me to the lab one visit with no word why and getting blood work. When he came in he PROCLAIMED "HA!!! you have no dedydration so you cant get fluids because it cant be ordered legally!!" This was written up of course and made me look like again I dont know my body and I am nutty. I never said I was dehydrated. I said maybe to a nurse and the student in ENdocrinology as I struggled to explain the severe symptoms that come on after vit D that 'it is kinda like dehydrated". But I had to do that because THEY wer being so dissmissive saying "oh so you get dry mouth" the implication being I am whinning about things that are no big deal.

I hope one day I get to try IVIG. I deeply hope that.

Annie59

Annie, my family spent alot of time crying holding me and wondering why all this was going on, they were very supportive and loving and still are nearly nine years on, Iam very lucky.

I feel for you about people being sooooo dismissive as they don't we know our bodies. I have learnt to take on board what people are saying and then telling them what I really am trying to get across to them, I think this helped with my neruo, when he realised I wasn't dismissing him we clicked. But this of course does not always work and we do come across as whinging, where as I am just scared and sick and tired of being dismissed, one day I recon I'm gonna explode, and people will say "there we told you you were depressed and not a good patient"

I don't know the answer when people don't listen, I just keep plodding on. Ie a very young Dr kept inisting I take my mestinon, I kept saying not on an empty stomach, but she kept jumping in and insisting, I said ok bring me some dry bikkies and I'll take it. Her concern was I would go into respiratory failure, mine was I would start vomiting again.....but we got there in the end, I hope I made her think a little, she certainly made me think how to go about getting Drs to understand me