[NatureLover]

I'm new here, and don't really know why I am here, but I guess I needed to vent. I guess I figure if anyone could relate, someone here might. I'll try to make this short.

Juvenile RA as a child, parents were told I'd 'out grow' it.
DVT as a teenager, almost lost my leg.
My mother died of complications of lupus when I was 6, and I have a niece and a cousin who have lupus.

8 years ago I got sick. It came on rather suddenly. Excruciating pain and swelling that started in my knees and over a couple of days spread to elbows, feet. The pain was so bad I couldn't even bathe or shower. Went to the Dr. two weeks later (the Dr. was a 1st class jerk). Tested for thyroid and lymes. Both neg. A week later a nurse called me and said if I wasn't better I should be seen because my sed rate was elevated. Saw a different Dr. and my ANA was mildly elevated and was refered to Mayo. The Dr. I saw said it was lupus and I was put on plaquenil and celebrex.

Skin biopsy not negative, but inconclusive.
Low C4
Antiphospholipid (B) positive
Sed rate 69
Blood in urine
P ANCA postive

I went back a month later, and big surprise, he said he changed his mind. He thought it was something vascular.

I was refered to a rheumy closer to home and he basically read the letter from the Mayo Dr. and agreed that it was UCTD. The Mayo Dr. never told me that. He yawned throughout the exam (which was non-existant). He told me that I'd only need the plaquenil for a couple of years and that my symptoms will just go away. At that point I quit going to the Dr. altogether and let my prescriptions lapse. I've been getting by taking lots of ibuprofen and an emergency stash of flexeril and hydrocodone. Within the last year I've had two episodes of excruciating back pain. The second time I ended up in the ER. They ruled out kidney stones, but suggested I follow up at the clinic. I made an appt. because I really NEED to feel better as I still have joint pain/swelling, muscle pain, swollen lymph nodes, extreme fatigue. I was hoping they'd be able to put me on plaquenil again.

The PA I got in to see checked for lyme and thyroid again. Again negative. But she called and said she was refering me to a rheumy because my sed rate was 67 and my CRP was positive (she didn't give a number). I saw the rhuemy last week and she took blood to check for lupus. Well, I got the letter today and she said there were no signs of any autoimmune activity. She then went on to say she thinks it fibro, even though I don't have any tender points, and she admits she can't explain the elevated sed rate and CRP. She also said I should look into possible 'treatments' with my primary care provider (I don't even have one).

So, she doesn't want to see me again, and I feel as if I've been tossed into the deep end of the 'fibro pool'. I don't think she even looked at my records I had transferred. I feel like my body is betraying me, and I refuse to continue to throw away money, only to be pushed aside. I don't even want to tell my husband (who has been very supportive) for fear he'll think I'm a nut case. I'm tired of feeling awful and not having a reason for it. I can't talk to anyone about it, because technically, there's no reason for me to be sick. I have to force myself to try to live a 'normal' life, but my quality of life is very low.

I immediately wanted to write the Dr. a letter, but what good would it do. Everying seems to fall on deaf ears.

I'm sorry I rambled and dumped on you all like this, I just felt I had to tell someone how I feel. And please don't get me wrong, I know there are many people who are suffering much, much more than I am (another reason I don't like to talk about it). Thanks for letting me vent.

 

[nicky00]

Hi Naturelover....

You understandably sound so at the bottom of your boots with the pure pain and frustration of it all not to mention the alienating feeling this pre diagnosis battle and diagnosis battle that seems a common thread here.

Im not going to answer your questions as from my own experience there are many people who's wealth of experience and understanding will reply in depth and give you some good advice.

Its a great forum so stick here and keep asking.

We all have felt that giving up feeling at some time.......the path to diagnosis and quality treatment when one is feeling so extremely awful is in my mind a medical cruelty.

Someones flippancy about your condition and that feeling your banging your head against a cognitive brick wall ( as if we had the engergy to be that angry!) just increases the misery of the condition.
educate yourself , this forum is brilliant......

I really hope you get some answers, a doctor that takes your condition as not just blood work but symtoms on board and therefore you get some relief very soon.

Best wishes

Nicky

 

[mommateer]

Dear Nature,
I have the simmilar problems, and my husband is on the fence. I'm tired of throwing money away, and I'm sick of doctors throwing me to the side as well. I have 1 doctor in my live that believes something is wrong with me, but she doesn't know what else to do, either. My best friend even questions everything I say. She thinks I need to just go to a psychiatrist. I told her if these last tests come back negative, I'll go to a psychiatrist - as well as my drs.
I'm getting back in the fight. It may not be lupus, but I know it's something, and I want to know what. You shouldn't give up, either. Your health is worth the money, so go for it and figure it out!

Take care! :hug:

 

[KarolH]

Hi Nature Lover,

Welcome to the board. I am so sorry for your frustrated uphill battle that has been going on way to long. There are a lot of doctors out there but in my humble opinion the good ones are few and far between.

My Rheumatologist was referred to me through the Lupus forum and he is one of the best doctors I have met. Becoming involved in forums helps us gain support, information and also a referral to a awesome doctor.

Lupus is tough to diagnose and sometimes it can take years. I understand your frustration as I was mis diagnosed with Multiple Sclerosis for a long time before my blood work started to clearly point to Lupus. I always knew I did not have MS yet getting the doctors to agree with me and really listen was another story.

Keep fighting the fight. Knowledge is power. Learn all you can and read, read, read. We have to be our own health care advocates. Your not crazy!!! You know your body and you know when it is not functioning right.

The fact that Lupus has been in your family clearly makes you more susceptible to the same. I know you will eventually find peace in a diagnosis and get on the right medicines so that you can start to feel better.

It really is all about the doctor so keep looking until you find one who really listens and works with you, not against you. There are 11 criteria for Lupus and I am curious how many of the 11 do you have?

Search this forum as it is full of valuable information along with knowledgeable and extremely supportive people. I think you have found a good place to hang out. Rant and vent all you want. We will listen and can certainly understand how you feel.:wink2:

Hang in there and sure hope to get to know you better. Come join us in the chat room sometime. You will see the chat room link in the purple tool bar at the top of the page, right hand side.

 

[Katharine]

Helo there naturelover and welcome

It is clear from your history, symptoms and family history that you need thorough investigation for whatever is going on.

With that DVT that you had as a teenager, was APS investigated? And, are you still on treatment for any blood clotting issues?

I know that there are times where the head banging and "no progress" thing just gets so tiring that we want to give up but really that is the last thing that you should do.

It can sometimes be difficult to find out precisely what's going on (whether auto-immune or something else) but I would certainly want to see another rheumatologist. I would make sure that that rheumy is one that specialises in auto-immune diseases (not all do) and that he/she won't dismiss your concerns simply because, at present, you have negative ANA. The fact that ANA was positive in the past (presuming it was a high positive) is significant and should be mentioned.

It really seems that you need to get to someone who will take this seriously and look at the whole picture.

I don't know where you live but you can ask for recommendations for a good lupus doctor here on the forum. As far as I know the mayo is pretty well considered but you can always be unlucky with a doc and that's not a reason not to try again. Obviously, I would insist on seeing someone different (if that doc still works there).

I had a similar experience to your with the "fibro pool", actually with my current rheumy. She had run all the blood tests, listened to me etc. but couldn't find the slightest sign of anything. I don't have fibro pressure points either and know very well that I don't have and have never had fibro. She was about to start me on treatment for fibro but as a last resort sent me to a dermy for a mouth and skin biopsy as I had dry eyes etc and she thought that it just might be sjorgens. The skin biopsy came back strongly positive for lupus (my bloods were still totally clean). The rheumy started treatment straight away. Eventually, by insisting on far more specialised bloods we were able to find how my disease activity shows up in bloods.

Anyway, that last little ramble just to say, don't give up. take a deep breath and just keep pestering with no let up until you get some kind of answer.

hugs :hug:

Katharine

 

[heavens_child0101]

I'm sorry you are having so much trouble. I know how it feels to know something is wrong and have no one listen. I have had problems with my health for years and no one can figure out what is wrong with me. Meanwhile I keep getting diagnosed with more and more things but the treatments for those things is STILL not helping. Don't give up, MAKE some listen to you! *hugs*

 

[Tallulah]

Hi Nature Lover, You are not alone. There are many of us in the same boat. Just because you don't have a name for your illness doesn't mean that you are not ill. You know that you are ill.
Be good to yourself.

Hugs, Tallulah

 

[LolaLola]

Dear Nature Lover, Pain is enough to make you feel desperate. You are ill not mad! I am in the Uk so am not much help with your Medical system. I do wish you all the best. I think almost all of us have struggled like you. with persistence, luck and Good Doctors it is possible to get some control over your symptoms. Don't lose hope.
x Lola

 

[marymackay]

Support for You

Hi Nature Lover
I'm so sorry that you have had such a runaround on your way to d/x.

Yes, that is the good thing about our site- that our Moderators, and all of us in our posts are looking for information, to negate often the lack of support we encounter through our life events, recurring or new symptoms.
It was inspiring to see the replies to your post.

As our determination to find proper d/x can be paramount, finding GPs, but especially specialists who can find time, knowledge to help us, takes so much of our time, money, strength. It is often a lone search :blush:as most don't want to know about our struggle.

All the best in your quest for treatment, d/x and support.

 

[fallinthruthecracks]

i can absolutely relate. it seems crazy to expect the system to be patient supporting rather than patient burdening. it SEEMS like a reasonably expectation. i suppose it's a good lesson in learning to focus your emotions constructively. at least, that's how i rationalize it to myself. on a good day. best of luck to you.

 

[pollianna]

Hi Nature, I was also in the deep end of the fibro pool for almost 10 years I have had similar symptoms to you. I was sent to a shrink cause it was apparently "all in my mind" only last April I was told yet again that there was no sign of autoimmunity in my bloodstream even tho I was exhausted, couldn't use my leg or even feel my feet and in terrible pain. Guess what? I got to the Lupus unit and he found it and I do have Lupus. I think the only wise course of action is to ask the doctors if they can send you to a specialist who only deals with lupus patients and then request that blood be taken when you are in a flare. If your mother was so ill then they have to take you seriousely. It really does sound as though something biological is going on. You just need to rule out everyhting it isn't. Did the doctor do the dry eye test ect?

I hope you feel a little better knowing you aren't alone.

 

[onetay]

Hi Naturelover,
I am glad you came and posted. You are not crazy and anyone close to you will know that. It often takes year to get the dx for lupus so hang in there. I am a firm believer in we must take our care in our own hands, you have to fight for care. I know it should not be this way but also if you find a really good doctor they will help you find an answer. That was my pep talk now... you really do need a good gp doctor. I found mine by doing phone interview with the staff and when I found one I could handle then I seen the doctor. I have to admit it was not easy but he was worth it and so is my new one. I would try a good dermy that is who found my sle for me and I was not even sure what lupus was. He did a byopie and said we will hope it is not lupus. It was the first one he had seen that was so clear cut lupus with a byopsie. It took 2 years of tip toeing thru doctors thinking I was crazy before he looked at me and said I will find out what the h is going on with you. I thought I was allergic to the sun, the grass, the yard work, but never a non-curable disease. When he told me my reaction was ok so give me a pill and let's get rid of it so I feel better. That is when I learned what it was and what could happen.

I am one of the first to tell people if you feel something is wrong than there must be something wrong. Don't give up find the right person to help you and please do try a dermy and take all the tests with you, not sure why they seem more understanding.
Best to you and keep us posted please and if you need to talk look up my info would be glad to talk with you anytime.
Tammy