[mommateer]

:sad:Good morning,

This is my story (long, sorry!):

For years, I have had different issues, starting back to 1996. After my second child, I started having frequent and very painful migraines. I also had a couple of fainting spells that were dismissed as connected to the migraines. I also had a time where my chest would hurt, and I was told that it was possibly "my muscle pulling away from my chest". Isn't that a problem?? Anyway, I've never been diagnosed with anything other than migraines.

In 1999, I had an episode of unusual swelling that landed me in the hospital for 3 days. They weren't sure if they wanted me in the stroke unit or not. They ran every test they could think of, and nothing. I kept having the swelling episodes on and off for 2 years before I was told I possibly had a-typical migraines (yes, migraines again!), causing my left side to react strangely. I started taking migraine medication when I had problems. Seemed to help, but I don't know, because I slept most of the time.

Fast forward a couple of years. I started having pain in my ankles; every time I woke up, I wasn't able to walk right because of the pain in my Achilles' tendon. Both legs. I didn't see a doctor, because I was tired of seeing doctors. Then I had pains in my hips. I went to the doctor for the hip pain, but didn't tell her about my ankles, because they weren't bothering me at that time. She sent me to a Rheumatologist anyway. When I first went to the office, the rheumatologist started diagnosing me with RA, without a history or a test or x-ray. I thought it was strange, he was telling me what my symptoms were, and didn't listen when I said I didn't have all of the symptoms he was talking about. Anyway, I got the tests, and no RA. No lupus, either. I got frustrated and left it all alone, said I would live with the pain. In May of this year, I started having swollen glands, I passed out at work, had very bad virtigo. Went to the doctor, nothing. I cried. I told my doctor to find me a good psychiatrist, because I'm crazy. She said I'm not crazy, she thinks it's lupus, and we'll find what's wrong.

Right now, I have iritis. This is the third week, but I just started taking drops because I didn't know what it was. I thought it was pink eye. When I went to the opthamologist, he asked the lupus question again. I've never had the "rash", no hair falling out, no mouth sores, no abnormal weight loss. I've had every other symptom, but when I go to the doctor, they say they can't find anything. I don't know what to do!! I know I need to actually continue my follow-up, but I get so frustrated, I think the doctors think I'm crazy, and sometimes I do to...:worried:

I was also told recently that I had reflux - the er doctor didn't touch me, take any samples, or do any x-rays. Just said my chest pain was reflux.

I have another appointment for blood tests, so we'll see.

 

[Katharine]

Hello there and welcome

Your story is all too familiar but I very much doubt that you are crazy; most crazy people don't think they are!

You have defnitely had a lot of bad experiences and I can understand why, at times, you have given up getting investigated. I went through times like that too and for many years just put up with the pain as I was told by numerous doctors that nothing was wrong, that they couldn't "see" anything and that I was just overworked, stressed, something...

It sounds like you do have an understanding GP. That is excellent and a great place to start. It's good too that he/she has ordered blood tests.

I presume that an ANA test will have been aked for. That is a regular screening test for lupus and other auto-immune diseases. It cannot confirm a diagnosis as it is only part of the pcture. For most people with something going on it will come back positive. For some it might not or it won't appear for quite a while. That doesn't mean that nothing is going on and it doesn't mean that you should be left to suffer and have a reduced quality of life.

I think that whatever the result you need to try a rheumatologist again. If it is an auto-immune disease they are incredibly complex and diagnosis is never easy. Now, when I say try a rheumatologist again, I think you need to take all the precautions you can and maybe ask for advice here in the "find a doctor" section for one that specialises in auto-immune disorders and that works somewhere near where you are. They don't all specialise. If there is no-one in your direct area it is very worthwhile travelling a little further to get someone good.

You do not need to have ALL the symptoms to have lupus. It is a very varied disease and everyone is affected differently. I have had some hair loss but not visible to other people, I have never lost weight due to lupus, in fact I gained weight. Most weight loss goes on in people in a severe flare and as I say, it is different for everyone.

Please don't give up and keep pushing with your doc who obviously doesn't think your crazy.

hugs :hug:

Katharine

 

[mommateer]

Thanks, Katherine

Your words help!
I think they did an ANA test before, but I'm not sure. I know my dr. talked about sed rate, but I can't remember what she said.

My biggest problem is that it seems as soon as I get a new job, I have a problem. I've learned to work through some of the pain, but there are times, like now, that I have to stop working because I have some crazy issue. I just want to feel better. I want a diagnosis. Even if it's that I'm crazy, then I'm okay. When my doctor said I wasn't, I really wanted to pull my hair out:hehe:!

 

[Maia]

It's certainly worth another trip to a different rheumatologist - one who won't assume they know what you have before you get a chance to talk about your symptoms over the years!

Autoimmune disease is certainly one possibility to investigate, and there are other things a good rheumy will consider (which may include Lyme disease or other tick borne illness depending on where you live for example).

The chest pain could have been costochondritis. Was that what they told you? There are other possibilities too of course.

Best wishes that you find a good doctor soon and can get to the bottom of it and get some helpful treatment soon. Hang in there!

 

[KarolH]

Hello mom and glad you found the board.

I think you should find a different Rheumy doctor and start over. Sometimes it takes years before things show up in our bloods. This is part of the reason why auto immune diseases can be difficult to diagnosis.

What your describing is what most of us have experienced through the years and the aches and pains can wax and wane.......some days bad and others good.

I sure hope you get feeling better soon and get on medicines that will help you. Maybe a pulmonologist would be helpful too along with a chest x-ray for the previous chest issues.

Good Luck.:wink2::wink2::wink2:

 

[LolaLola]

Hello Mom!
You have been very strong so far. I hope you get the support you deserve from the Docs.

 

[onetay]

hi,
Do you think your crazy because no one can find anything wrong? For most of us we have been down this road more than once. It took 2 years of poking,x-raying, and eliminating(oh yeah and at least one of every doctor) before a dermy did a biops and there it was LUPUS. You may or may not have lupus but don't give up keep looking for the answer and don't let the doctor tell you they aren't paying you, your paying them to listen to you. This is just me but I always ask a doctor that tells me what is wrong with me without talking to me or test, You know this how again? News flash not everyone that runs a temp is contagious, I have a low grade fever most of the time and guess what I give anyone lupus. What they think they know sometimes it's what they know. I am sorry if I am coming to strong, but it is hard to hear that yet another doctor thought he was right with nothing to back it up. Stay focused on finding an answer for your problems, it maybe 1 answer or it maybe several things going on.
Tammy

 

[mommateer]

Thanks you guys

I'm going to the opthamologist again today so hopefully he can cut down the useage of my drops. Although I look kinda cool with shades on all the time8), I'm tired of not being able to see! After that, I go back to my GP for blood tests.

Maia- I've never heard of costochondritis, and I've been tested for Lyme disease several times, and I've never seen a tick. Makes me think the docs think I'm a dirty woman who lives in the woods!:lol:

Whatever it is, I just want to know.
I'll post an update later.

 

[vicky mcculloch]

mom i have got so many of your symtoms still have not plucked up the courage to go back to the doctor, so sick of going over the last few years. i'm on thyroid tablets and take stuff for ibs but the symptoms just do not seem connected to these!!! i have a gland in my kneck that feels quite lumpy since last xmas my head hurts my kneck and shoulders are stiff and sore, knees and ankles swollen and feels like someone has kicked me and my arms and wrists feel weak, swollen and painfull. I'm just worried going with so many symptoms i feel for you as i too feel like i'm going crazy doctors can be so unsympathetic sometimes and make you feel stupid when all we want are answers and to get on with our prescious lives. hope yu get sorted

vicky:sad: