What is next on the list?

[Kateri7]

Hello, I have some questions here. I have yet another month or so to have my lab results conveyed to me but I do have the page here. I am a 31 year old female, who is being thought to have possibly lupus or MS. I was sent to a rheumotologist by my opthomologist because I have had neovascularization of the optic nerve due to an occlussion in the right eye. Now as well the found my optic nerve cup in the left eye is enlarged. I believe my Opthomologists thinks I might have vasculities of some sort. But I am also being sent to a nuerologist as well. I appreciate their concervativeness with my health though to be honest. Hey my life is important to me! =)

My blood test odditites are as follows glucose was 47. My normal rate is usuallly low 70's fasting, high 70's - low 80's non fasting. This I did get an emergency call from the nurse to make sure I was ok, they say maybe due to my fasting before the test but this is the first time that has happened to me and I have multiple fasting diabetes tests, as well I ate 30 min prior to the test because I had made sure I could eat, hey I was hungry so I wanted to be sure I didnt have to go straight to get my blood test. No wonder I was starving!, mch is elevated slightly at 31.1as well as eosinsophil was 3.3, ana screen was positive 80 (dont know what that means) with a homogeneous pattern, vitamin d deficient (19), small amount of leukocyte in urine, occ in squamous epithelial, bacteria few, and mucous occ.

I am wondering mostly what kind of rigamaroo they might send me through next due to all the wierd results I have recieved.

Many thanks in advance.

[Kateri7]

It is ok Karajo. I understand completely how it can knock out down and it takes a while to recover.

I did the same thing. Although my doctor told me there is a 3% chance he could be wrong and he will leave it as an open diagnosis for now he write dx SLE on my script for an echocardiogram. My GP confirmed what this ment to me. They are still checking it out just to be sure it can't be something else so I am assuming they will leave it a little open ended for the moment.

I only told close friends and family. I am thinking these two people in particular just might not be able to handle what is going on. They are a bit of the dramatic type but they are also very close to me. Its a bit disheartening but I need to back off them and I have. I was told to do this, if they cannot respect the fact that drama can literally hurt me, then I will just pick up my marbles and play with someone else, so to speak. I do not plan to tell anyone else and with any luck I wont have to. I have the same mind set as you, I just wanted to know how you deal with it if you had at all. I also told them I don't want anyones pity party, but I want them to understand I might not be all well all the time and they need to have concideration for what I am going through. I want to keep these people in my life, hence the reason why I told them. I know they wont understand the details and I have already have lack of interest in explaining anymore than I already have. I certainly couldn't have completely understood before this landed in my lap, although I am good at putting myself in others situation, it is different when you are actually in those shoes. Yes, its OK.

I agree that its a choice to be happy. I also have told them hey I can't worry about everyone else when I need to concentrate on my own life. I can't watch that crumble just to comfort everyone...I matter just as much as everyone else.  

Thank you for your inspiring words. We think alot alike. I love simple thigns anyhow, it has always made life more than bareable for me and its been a long tough road but its made it beautiful now maybe even more so. Keep choosing to be happy, it only helps in the long run anyway! May God always keep you that way! =)

God Bless you too Kara & Amen to your last sentence!

[karajo]

Hi Kat, I have to apologize.  I just realized I dropped this thread somewhere in Nov.  I got really sick somewhere in that time frame.  Please forgive me.  

To answer your question, I didn't jump up and tell everyone I had lupus.  In fact I really tried to hide it.  Only really close friends and family were told, and only after a dx.  When my GP told me it was looking like lupus, I cried for 2 weeks and my husband was the only person I told.  Don't ask me why, I just didn't want to talk about it.  Maybe denial was part of it.  But as I started feeling better on the plaquinel, I told a few people...and even then I was very selective.  And I would add, I am on medicine that is helping.  Some people had heard of lupus, but didn't really know what it was.  I didn't really talk alot about it.  Sympathy was the last thing I wanted.  

But I can see you are going through some stresses unrelated to family/friends.  I am very careful to guard my stress level.  And if I know there is someone who just loves drama, I walk a wide circle around them.  Actually those type people don't know I have lupus.  (The way I have kept the general public from knowing is I don't get out when I'm flaring)  They only see me on good days.  Only my true friends have seen me walking w/ a cane.  Don't feel bad about feeling the need to distance yourself.  Most people really don't want to hear our troubles.

I pray that you and your husband work things out though.  That is really where you need to direct your energy.  

Some things that I have learned in all of this is to laugh alot.  Find humour in everything, from the squirrel that run across a power line and amazingly don't get fried, from the crazy automated voice activated way businesses do buisiness....and the way I keep telling them that I would like to speak to someone, please.   Happiness is a choice.  Just know that there is no way someone else can truly understand the symptoms we deal with....and that's OK.  I'm choosing to be happy.  

God bless you.  Kara

The joy of the Lord is our strength. :0)

[Kateri7]

Thank you Karajo,

I have a question for you. Do you have lupus? If so did you ever find it hard to deal with family memebers when you told them you had lupus? Honestly, I have with only two people and I am not really sure if I am going to deal with those people much anymore.  They keep trying to tell me how I feel and aren't very supportive. I think they just might be in denial but they are sarcastic and a bit cold in character anyway. I was reading that having lupus you should keep your stress level to a minimum as in order not to provoke flares as well as many other things as well as some people saying just to ditch unsupportive people completely. This has definately stressed me out and I am fixing my marriage on top of that. So anyhow, to complete it I got sick that same night of the confrontation. Not sure if I have the flu or a flare yet but it does concern me that if I am hearing correctly and they don't wish to be more gentle that I might not be able to deal with them anymore. Any suggestions as to what might help if you have gone through the same thing?

Thanks again.

[karajo]

Thanks for the update.  We are certainly here for you.

[Kateri7]

Hi Everyone,

Just wanted to update. My doctor has informed me that as he isn't giving me a formal dx but he is 97% sure I have lupus. Asked me to go to the websites about lupus and call him right away if I develop any more signs. He said he would call it a mild case. I am being sent for echocardio gram because of chest pain and more so the eye problem and a whole bunch of other tests as well. Thank  you all for your responces etc. I truley appreciate it. =)

[want2bik1]

There is a paper by Bernard Windham(Ed.) Chemical Engineer Biostatistician who has compiled a number of studies.  The title is "Mercury Amalgam Fillings is a common cause of MS, ALS, PD, SLE, RA, MCS, AD, etc.".  Google "Bernard Windham" and you can read his findings.  He has listed many references of studies supporting his statements. You should get all the information you can concerning your illness so you can choose the best way to treat it.  Diet can be helpful in treating these diseases.  Vitamins and Minerals found in the raw fruits and vegetables give the body what it needs to help get rid of these poisons.  Dr. Swank has a web site with a diet which has proven to help in treatment of MS.  Paleo diet has also shown success in treating these neurological diseases.

[Kateri7]

Thank you for the info. I honestly have not been so sun sensitive until this year. I am naturally fair skinned in the winter months I usually tan fine and of course just my luck that I LOVE the sunshine. Never burned so fast nor has the sun ever taken so much out of me in such a short time, this year was a year of BIG changes for me. I will have to agree with you that I will not be going out into the sunshine as much and have not because I did notice the coincidence in the fatigue & sunshine, besides it is winter so I don't go out so much right now. I have developed a rash today and today has been a big in an out day for me with errands, appointments for the kids and such, so I wonder if Im going to regret it in the morning or not. In the summer time I certainly did! But I had so many appointments and things to do it makes me wonder how do Lupus patients deal with no sunlight, especially if they are sun lovers like myself? I know that sounds like a stupid question because of course you adapt, but if the doctors find I do indeed have lupus I will admit that is one thing I would definately miss. As for now I don't place DX on myself but I definately know what makes me feel worse and what doesn't and being out in the sun/heat definately makes me feel worse.

Again thanks for the response as I truely appreciate it being this is a new territory for me having all these doctors wondering what in the world is going on with me. I say hey I always knew I was "special"

[Kateri7]

Wow, thank you for all the wonderful information you have given, it really makes one think of all that is out there and you dont know it. Thank you for your post I really appreciate it and I will definately look up the info you have shown. =)

[OldFatChick]

While I agree with much of what want2bik1 said, please be aware that sunlight can trigger flares in people with Lupus, and probably other auto-immune issues, as well.  The rash on your cheeks is consistent with Lupus, as is the fatigue and joint pain. In which case I'd stay out of the sun whenever possible.

[want2bik1]

They use the antibiotic arsenic compound (roxarsone) in the feed for chicken.  This has been banned in Europe since 1999 but the FDA feels it is appropriate for our food supply.  It allows our chickens to grow bigger faster and gives them a better color.  I remember when I was younger you never use to see such hugh chickens.  They can grow them bigger and faster using arsenic.  It is all about the money.   If it says organic they are not allowed to use arsenic in the feed.  Farmers like to use arsenic in pesticides because arsenic kills insects.  Arsenic is in our water supply.  Ash leftover from burning coal contain arsenic, mercury, lead and other heavy metals.  The U.S. government is encouraging farmers to dump it on their fields to get rild of it.  They find arsenic in rice mainly because it is grown in flooded fields.  Google "arsenic in our food" for more information.  I use a solution of vinegar and baking soda to wash my fruits and vegetables.  Low levels of vitamin D have been associated with neurological diseases such as MS.  Think it is important to spend time in the sun.  I try and spend time in the sun everyday and take cod liver oil.  You can take supplements but it is dependent on you bodies ability to absorp the supplement.  Things like probiotics help your digestive system to absorp the nutrients.  I do things like yogard and kombucha tea to give me the probiotics.  I use to use the flavored yogard but when you read the labels they have things like high fructose corn syurp and modified corn starch.  Anything modified has been fool with and may not be good for the body.  I now use natural yogard that only has milk in it.  I put it in my shake in the morning.  You can also put fruit such as pineapple in it.  Hope you can find out what it is in your enviroment that is making you sick.      

[Kateri7]

In my test results it showed I was Vitamin D deficient I have a level of 19 when I should be at least 30 and from what I hear 50 is actually the optimal amount and will be changed soon as Europeans have already adopted this. This can create all the symptoms I have had with the exception of my eye issue which is why all this testing was started in the first place being that it is extremely abnormal for an otherwise healthy 31 year old to have these issues. Basically I had a stroke in my eye. As well, I had a pretty big drop in blood sugar levels and something else is going on in my blood work, doesn't look life threating by my eye, but not sure what those blood tests exactally mean.. I am hoping this is all it is. In the mean time they are doing a slew of tests on me and as well the Rheumy has me headed to the Nuerologist because my symptoms are more in the nuerological area. I definately have to agree that lots of nasty things are in our food. High fructose corn syrup is one of the big ones that use mercury in their processing as a preservative, alot of companies have now taken it out. I try to get the least amount of preservatives in my food, although I wlll not lie and say I dont stray here and there with that. So in that respect I try to do the best I can with the budget I have to keep my family away from too much junk because I cook at home rather than do the fast an easy route. I dont buy things with fake sugars or a slew of perservatives. Thank you for the post and of course I have taken that in to concideration. I unfortunately don't have mercury fillings so that is a no go for me. I agree as well, raw fruits and veggies are our natural diet so it makes since we feel better on a natural diet. Although, I am curious as to how arsenic getting into anyones food now a days?

[want2bik1]

Something in your enviroment is making you sick.  I had the same sympthoms but they could find nothing when I went to the emergency room.  With me it was the amalgam(mercury) fillings in my mouth which was making me sick.  There are many things in our enviroment which can make us sick if we get enough of this bad stuff in our bodies.  To name a few mercury, nickel, arsenic, high fructose corn syrup, aspartane, hydrognated oils, pesticides, and many chemicals which they put in the process foods to keep them from spoiling.  Read the back of these packages and see if you can understand what these chemicals are that you are eating.  These chemicals keep the bacteria from attaching the food and allowing it to spoil but these same chemicals are not good for our bodies and can make us sick.  I find eating the raw fruits and vegetables make me feel the best.    

[Kateri7]

To answer your other question no no one has put me on anything for the UTI, wasn't sure that is what I had but I don't go to the doc until late december. Maybe I should ask him for an RX while I wait. Thanks for the heads up on that. =)

[Kateri7]

One more addition kara. The first time I had my ana checked it wasn't positive. This time it was on my lab papers. Maybe cause I was in the sun more?

[Kateri7]

Hi Karajo,

Thank you for the response. As for me my symptoms have been serious fatigue, the kind where I cant even get out of bed sometimes. The fatigue started this summer and I have noticed Im much more fatigued in the summer months. Since it has gotten cold I feel a bit better to be honest. At one point in time I felt almost numb in my arms & shoulders that I couldnt even icing the cupcake without serious effort & sitting down as I was extremely fatigued, this happened for my daughters bday (July). It took me all day literally to icing these 20 cupcakes! Also I was having trouble keeping my hands steady..Im sure that was because I was putting so much effort into it. Later on during that day I felt slightly better and now that I think about it, it was as the sun went down but I refused to go to bed at my own daughters birthday party even though I was seriously fatigued. What mothers do for there kids right? =) As well I started have serious migraines and some flashes of light. I did start developing some sort of rash that always starts out as a few red bloches on my face, which my son noticed first, and then it spreads over my cheeks and sometimes to the forehead area. By the next day I do not have this rash or sometimes even hours later. I am usually fatigued after being outside in the sunshine. In the summer months about 2 hours was all I could stand without needing a nap. I have also been having tingling sensations for the past two years in my shin and my head. This usually happens on the right side. This summer I developed some sort of swelling in my feet where they turned red, to me felt on fire but to my husbands touch did not feel warm as they looked red hot. This hasn't happened in a while. I did noticed a different symptom I just had a few days ago that my hands turned very red and swollen like my feet did. I was also stressed at the time after I relaxed this went away. The other symptoms that I can find clues to are muscle twitching all over my body, not just constricted to certain areas, sometimes dizziness which seems to be when im seriously fatigued since its been cold I do not feel dizzy, and occassional "brainfog", muscle soreness with little effort, sometimes I even feel like my bones are achy, headaches/migraines, joint pain particularlly in my hands, elbows & shoulders.

I know this is really long, but I feel details are what helps people see what is going on. Thank you again very much for taking the time to answer, it is truely appreciated! =)

[karajo]

I'm not familiar w/ the optic part of your post.  But I do know that symptoms are considered in a lupus dx as well as lab results.  

Some of the more common symptoms of lupus are fatigue, joint pain and facial rash due to sun exposure.  The best advice I got that helped me proceed forward in a lupus dx was to spend time in the sun prior to having my ANA checked

ANA is an indicator that something autoimmune might be going on.  Honstly, 1:80 is very low and not considered elevated at all.  If you are not having symptoms, I wouldn't give lupus another thought.  

The really low blood sugar probably needs to be followed up by an endocranologist. (probably didn't spell that right)  

The really low vit D needs to be treated and followed up w/ lab work periodically.    

Did your dr. put you on an antibiotic for the UTI?

What kind of symptoms are you having?

[Kateri7]

Sorry for the repeated post. My mistake.