confused, frightened, overwhelmed

[starsink]

This is so personal for me but I wanted to write in hopes of hearing from other's with a diagnosis & who might be able to tell me what other steps I should ask my doctor to take. I have had the ANA test done several times but it's always normal. I was diagnosed with lyme disease simply by symptoms and NOT blood work. I was never comfortable with that diagnoses but was suffering with extreme mania at the time and just did what the doctor ordered me to do. I am currently having better days but I know that it isn't going to last for too long. Here are a few of my symptoms [which are so entwined with other symptoms of illness/disease, it gets confusing and frustrating].

Butterfly rash on my face, it burns and is very itchy. I read somewhere on the net that the lupus rash doesn't burn. Is this true? I sometimes get small "marks" on my hands that feel like the rash, they burn and itch as well but are not a full blown rash. They're more or less hot spots and sometimes blister. I used to get hot rashes on my arms and neck but that hasn't happened in months. The butterfly rash first appeared about ten days ago and my doctor prescribed prednisone to treat it. I also am starting to get blisters in the roof of my mouth. I have lower back pain and hip pain. It sometimes is difficult for me to walk or to drive or to even sit for a long time. My right arm, hand and sometimes leg get ice cold. This happens often. I have headaches, dizziness, fatigue, stomache discomfort/pain. I lost 20 pounds in two months and could not eat regular portions, I'd take three bites of food and I was done. My appetite has improved but not much. Occassionaly I experience a severe pain in my right leg and ankle. My chest hurts [but i am a smoker trying to cut down.] And I know this is weird but I vomit if I get too tired and don't sleep. I have memory loss and sometimes speech problems, like stuttering, forgetfulness, long pauses. I have neck pain [almost constant] and swollen glands. My vision is sometimes blurred AND well, geez I get weak a lot too. My eyes also bother me a lot, I now have perminent yellow eyelids. I also get very ill in the sun. I was taking medication to treat the lyme that caused sun sickness but I have been off of that for over three weeks now. [not sure if it's still in my system] but I am still getting sick when I step outside.

This gets a little weird too but I want to put it out there and see if anyone else experiences this with lupus. When I first got sick I started having mental health issues. I was having hallucinations, paranoia and mania. I went to a therapist and was diagnosed with this and then that, given some meds and it somewhat tappered off. I do however still have anxiety [most likely because of my health!]. That's when I really started going down hill. Chronic fatigue, stomache pain, etc. I stopped going to the doctor who diagnosed me with lyme and am seeing my regular doctor who thinks I may have lupus but wants me to see a disease specialist. Which I am doing but the kicker is that I live in a rural area and the disease specialist is moving and his replacement will come in early October. My doctor is honest and tells me, she can think I have lupus BUT doesn't want to be the one to diagnose or treat it because she isn't qualified to do so. But waiting until October is going to drive me nuts. The symptoms don't all come on at once, they couple together and take their time. Usually a sick period lasts for a month or more and then I have a few days of feeling good before I'm sick again.

I know I'm long winded! I just wanted to be sure to include it all. I've also had some things show up in other blood work, like EBV [which can make you really sick too] and low level VEGF. It's been about 4 years now with my being unhealthy. Any advice on testing I should have done or whatever you might feel you want to share with me, please do so. And thank you taking time to read my babble. I wish everyone good days~*

And do you have to have a negative ANA to have lupus? I've had that tested about 4 times in 4 years and it's always normal. Maybe I do have lyme and am just freaking?

[starsink]

I just read "Criterias Used To Help Diagnose SLE, Criteria in conjunction with symptoms Options" posted here and wow, it was very helpful. And there's much more that I have and didn't even know it was lupus related. I should have mentioned in my above post that one of the blood abnormal findings were for IgM and CRP. When I read the criteria message I just started crying. I've been taking medication for lyme disease for 3 months and really feel like I've been misdiagnosed and maybe harming myself by the antibiotics I was taking.

I know that my letter may go unanswered and that's okay. I know that mental illness is a bit like a stigma and people don't want to admit to it. But when I read that it is an actual symptom of lupus, my heart dropped to the floor. I think tomorrow I will try and find a disease specialist in another town. I'll have to drive rather far to get there, but I'm really beginning to see the seriousness of this and am quite concerned about my well being.

Anyway. This site has been informative and I will return, especially if I ever get a correct diagnosis.

I wish you all well being and good doctors and loving support.

peace

[crm1209]

I'm so sorry for the worry you're going through.

I'm glad you read the diagnostic criteria and found out that neurological and mental health symptoms can occur in lupus. I hope you are able to find a rheumatologist who has experience with lupus and who will take the time to listen to you, and I really hope you don't have to wait long to see someone. The waiting and uncertainty can be so hard.

This forum is a great place to come to share worries, questions, and news (both good and bad!). Please let us know how you're doing.

Renee

[halfpintfl]

style_emoticons/<#EMO_DIR#>/wavey.gif Hi there, and a warm welcome to this site. Don't ever worry about
us thinking that you are sounding a little goofy, cuz we all sound a little goofy
around here at one time or another. I would wait till the new Rheumatologist
moves into town and get an appt with him. It wont be any more of a wait probably
than you would have if you went and found a new one in another town. In the
meantime, write down your symptoms, keeping in mind that dr.s have limited
time and don't want to read a book, so keep it short. Begin with the worst
symptoms first, tell how long, where it is, how bad, etc. include any personal
medical history. That will probably be enough for your first visit. And,
you should know that lupus is not diagnosed by blood tests alone,either,
they are used as a helpful guidelind to the dr. luck.


Be well and keep posting. style_emoticons/<#EMO_DIR#>/cool.gif

[Iolar]

<div class='quotetop'>QUOTE(starsink @ Jun 16 2006, 11:12 AM) Quoted post</div><div class='quotemain'>
This is so personal for me but I wanted to write in hopes of hearing from other's with a diagnosis & who might be able to tell me what other steps I should ask my doctor to take. I have had the ANA test done several times but it's always normal. I was diagnosed with lyme disease simply by symptoms and NOT blood work. I was never comfortable with that diagnoses but was suffering with extreme mania at the time and just did what the doctor ordered me to do. I am currently having better days but I know that it isn't going to last for too long. Here are a few of my symptoms [which are so entwined with other symptoms of illness/disease, it gets confusing and frustrating].

Butterfly rash on my face, it burns and is very itchy. I read somewhere on the net that the lupus rash doesn't burn. Is this true? I sometimes get small "marks" on my hands that feel like the rash, they burn and itch as well but are not a full blown rash. They're more or less hot spots and sometimes blister. I used to get hot rashes on my arms and neck but that hasn't happened in months. The butterfly rash first appeared about ten days ago and my doctor prescribed prednisone to treat it. I also am starting to get blisters in the roof of my mouth. I have lower back pain and hip pain. It sometimes is difficult for me to walk or to drive or to even sit for a long time. My right arm, hand and sometimes leg get ice cold. This happens often. I have headaches, dizziness, fatigue, stomache discomfort/pain. I lost 20 pounds in two months and could not eat regular portions, I'd take three bites of food and I was done. My appetite has improved but not much. Occassionaly I experience a severe pain in my right leg and ankle. My chest hurts And I know this is weird but I vomit if I get too tired and don't sleep. I have memory loss and sometimes speech problems, like stuttering, forgetfulness, long pauses. I have neck pain [almost constant] and swollen glands. My vision is sometimes blurred AND well, geez I get weak a lot too. My eyes also bother me a lot, I now have perminent yellow eyelids. I also get very ill in the sun. I was taking medication to treat the lyme that caused sun sickness but I have been off of that for over three weeks now. [not sure if it's still in my system] but I am still getting sick when I step outside.

This gets a little weird too but I want to put it out there and see if anyone else experiences this with lupus. When I first got sick I started having mental health issues. I was having hallucinations, paranoia and mania. I went to a therapist and was diagnosed with this and then that, given some meds and it somewhat tappered off. I do however still have anxiety [most likely because of my health!]. That's when I really started going down hill. Chronic fatigue, stomache pain, etc. I stopped going to the doctor who diagnosed me with lyme and am seeing my regular doctor who thinks I may have lupus but wants me to see a disease specialist. Which I am doing but the kicker is that I live in a rural area and the disease specialist is moving and his replacement will come in early October. My doctor is honest and tells me, she can think I have lupus BUT doesn't want to be the one to diagnose or treat it because she isn't qualified to do so. But waiting until October is going to drive me nuts. The symptoms don't all come on at once, they couple together and take their time. Usually a sick period lasts for a month or more and then I have a few days of feeling good before I'm sick again.

I know I'm long winded! I just wanted to be sure to include it all. I've also had some things show up in other blood work, like EBV [which can make you really sick too] and low level VEGF. It's been about 4 years now with my being unhealthy. Any advice on testing I should have done or whatever you might feel you want to share with me, please do so. And thank you taking time to read my babble. I wish everyone good days~*

And do you have to have a negative ANA to have lupus? I've had that tested about 4 times in 4 years and it's always normal. Maybe I do have lyme and am just freaking?
[/quote]

[nutsformutts]

Have you ever been tested for HCV (hepatitis C virus)?

[tbunny1]

style_emoticons/<#EMO_DIR#>/wiggle.gif Welcome to the boards starsink! You will find this a wonderfull resource for information as well as emotional support. Lupies are weird, and we have weird symptoms. Nothing is likely to suprise anyone on this board!

I personally did not test ANA positive for over 2yrs after I became chronically ill. I too, had a GP who was quite convinced I had lupus, but would not make the diagnosis herself. I remember laying in the bed at the hospital, begging her to just treat me anyways. The rheumatologist at that time said she was "freaking out". She was right all along.

I also have CNS Lupus (central nervous system, or neuro/psychiatric), with definite, lupus related, biological psychiatric disease. A good psychiatrist (not a therapist or psychologist) is a medical doctor first, and can help you sort out what is going on. A nuerologist would be in order as well with your vision problems. Eye sight is nothing to mess around with - I almost lost mine. Ask your doctor for some refferrals, and be honest about the psych problems. It is nothing to be ashamed of, but no one can fix it if you are not honest.

I think many of us have struggled with the frustration, despair, and doubt that comes from waiting to be diagnosed. Hang in there, and vent all you want! You help me to know that my experiences are not unique, and that we are all in this thing together.
style_emoticons/<#EMO_DIR#>/flowers.gif Tracy

[starsink]

tbunny1: thank you for your response! it helps calm me to know know that my experience is NOT unique!! i didn't even know that there were different types of lupus until recentlly, reading here and on the net. my ANA came back normal again. my MRI and cat scan show a sinus infection and that could be why the terrible headaches. and lately, the past three days i've been feeling so much better, not great, but better. i have an appointment with an ear/nose/throat doctor today that my dr. made for me, about the headaches. i suppose now i just keep going thru the motions until...

[halfpintfl]

style_emoticons/<#EMO_DIR#>/wavey.gif Hi Star, it's me again. I just wanted to add something. I don't know why, but Rheumatologist
seem to be a scarce as hens teeth, everyone on this board , practically, has had to wait months for their
first appt. I would be guessing that the average around here would be three months. Mine personally
was just under 5 months, but, it is worth the wait. So spend your time making and then re-fining your
list. When you think you got it right, make a copy. One of them, you hand to the Rheumy at the end
of your session, and just smile and say that this is for you to put into my file. Then he has it, no excuses.
The other one you keep at home , and treat it like a journal, if you are fine that day, do nothing, if
something happened then write it down, sort of like a journal and keep it up to date. then b/4 your
next appt, you downsize it a little, and you wont forget anything. also, a piece of paper and a pen in your purse
is good for questions, Do write the answers dsown, cuz, if your like me, you will forget b/4 you make it to
your car. Also, there is no one blood test that can say, "yes", you do have lupus, or, "no" you do not have
lupus. The blood are part of the process and used to guide the dr in a certain direction. And on this site, I
think we are all a little lupie quite often. You need any more help, just ask or PM me. And there are two rules
to remember; 1- the sun is your enemy and 2-stress=pain. (really bad) Take care hon, we are here to
support you.

Be well and keep posting. style_emoticons/<#EMO_DIR#>/cool.gif

[alobreto]

Hi, Starsink! style_emoticons/<#EMO_DIR#>/wink.gif
And welcome to the forum! style_emoticons/<#EMO_DIR#>/smile.gif

I agree that the wait to see a rheumatologist can be several months. So it doesn't seem at all out of line that your first appointment would be scheduled in October.

I live in rural Oklahoma and hubby drives me a distance to see a doc as there are NO doctors in my area AT ALL. Your health is worth what it takes to get on track. In the event that your closest rheumy is not suitable for whatever reason, it's worth the effort to find another one.

Medical schools are great places to get care, by the way.

Again, welcome!
Angela style_emoticons/<#EMO_DIR#>/smile.gif