[*~aurora~*]

I got labs back today... WBC is all over the place, mostly borderline low but one is high... and my ANA is totally negative. (none detected)

I'm ready to pull my hair out!!! What on God's green earth is wrong with me? I was so sure it was lupus... my DOCTORS were so sure it was lupus. *bangs head on wall repeatedly* I have so many symptoms of it. Yet the ANA is negative. What else acts like lupus??? What else causes my crazy list of symptoms?

I still have the rheum appt today, but I'm already ready to give up!!! If my blood work is going to be totally normal, how am I supposed to get any answers?????

:worried:

 

[Clare.T]

Hello Rachel

That is certainly a set back on the face of it but lupus can't be ruled out just because the ANA is normal. There are a number of other blood tests that could be significant including those for antiphospholipid antibodies. Diagnosis is or should be mainly clinical with the blood tests acting as further indications or confirmation.
The problem is that lupus presents in so many different ways as I expect you realise. It can accompany other conditions too, either autoimmune or not so it can be hard deciding which is causing what symptoms.

It could be worth pursuing the endocrinology angle as suggested already by some doctors. I notice in one post you mentioned that excessive hair growth was a symptom of lupus but I wouldn't say it is.

Clearly you are a complex case. I hope the rheumy has some insight today. He will probably be ordering more tests if the ANA is the only lupus one you have had done so far. Often they order tests for themselves anyway. Anyway, I hope it doesn't turn out to be a total waste of time.

Bye for now
Clare

 

[greenhaggis]

Rachel,

Hope the Rhuemi appointment went well this afternoon!

Take care,

 

[*~aurora~*]

Thanks, I hope so too...

I don't remember saying hair growth was a symptom of lupus... if I did I was pretty crazy out of it that day, lol. Maybe indirectly though. Hard to say. I mean, if something attacked a part of my endocrine system and caused excessive hair growth, it might be related.

I seriously stood on the bridge today between the clinic and my campus just so stressed out and frustrated that I was thinking about jumping... but I didn't, obviously. It's just so hard to fight and fight and fight and never get any better.

I feel like I'm fighting hordes of nazi vampire zombies or reavers and they're not killing me because I'm strong but at the same time I can't do much else until someone steps in and helps me kill them... otherwise I'm going to be standing here with a Harkonnen in one hand and a sabre in the other, fighting and not able to do anything else for the rest of my life!

Sorry for ranting, I just couldn't stand it anymore. rheum appt is in about an hour, let's hope it goes better...

 

[*~aurora~*]

I'm sitting here in the blood draw center crying my eyes out (or, TRYING to-- low tear production makes that hard). I feel awful. It's raining, my feet turned purple from the cold (and it's not cold really), I'm twitching from blood loss, and the rheum was... very mediocre.

He ignored the fact that I have AI in my family and a whole bunch of AI symptoms, dx'ed me with hypermobile joints, and sent me for bloodwork and a neuro/psych consult. His mindset was basically "Well, your ANA is negative, so you definitely don't have AI/lupus." He couldn't answer why I have so many symptoms if it's not AI, what I should do to get better, and he didn't even refill my flexeril.

I'm tired, I ache, I'm miserable, I just want to curl into a ball and die. I feel like I'm some weird mutant case that no one cares about because I'm not in imminent danger of keeling over. Never mind that I'm in a state of living death-- I wish I'd die or get better! I've been sick for 20 years, really sick for 4, and no one cares. Sure it could be worse, but that doesn't comfort me right now.


And on top of that, I'm supposed to be at a meeting in 30 minutes and I have NO idea where I'm supposed to go, too weak to get there, and won't be able to get home until 10PM tonight (pulled an allnighter last night, had no real choice). I don't know what to do, I just feel like crap.

ETA: In other news, I have been definitely diagnosed as NOT having fibromyalgia. But he said "Eh, you have hypermobile joints, you'll just hurt a little more than other people." Great, thanks...

 

[debatat]

Hi Rachel

Sorry that you are so tired and stressed. It is hard when we feel that doctors have just dismissed us without really listening to us. I think that there are others on the sight with hypermobile joints. Maybe they can give you some advice. Take some time out for yourself to do something you enjoy, this can help to recharge our batteries. Hope that you feel better soon.

Deb

 

[LolaLola]

Rachel,
First of all I am sorry you feel so bad. Is there anyone you can talk to, preferably as soon as possible!

My ANA was negative for years! It can happen.
Hypermobile joints can cause pain and even flu like symptoms particularly just before periods when hormonally you ache more and tendons etc. are a bit more prone to injury.

But I have a severe form of Hypermobility called Ehlers Danlos syndrome, and I have to say that is pretty easy compared to Lupus!

I can't remember what part of the Country you are but I would strongly recommend you scrape up the money for a Consultation privately at The London Lupus Centre. Some of the Docs. there don't even require a Referral Letter although obviously one is helpful. They are used to seeing people who have been written off by other Docs. I know it should not be necessary to spend money but it is a very good option so you can start getting the help you need.

If you need to know anymore I am very happy for you to PM me.

Do yoiu feel any less upset this evening? Please let us know!
x Lola

 

[x_claire_x]

a hug for you

Hi Rachel, please don't give up on yourself; you know how you feel and how hard it has been for you so you have every right to feel knackered and fed up but an answer may be on the horizon for all you know so keep plodding and remember people here do care about you and I am sure people in your life do to, maybe they just need to know how bad you are feeling. Is there anybody you can let of steam and tears to? Please find someone to talk to and get back to us here soon xxhugs and more hugsXX

 

[*~aurora~*]

thanks, I finally found my meeting and my friend got here so I'm a lot more mellow... I was sobbing all the way over here though! (or, like I said, TRYING too... my sobbing now is like 3 tears total or maybe some wet eyes, UGH, I don't know what's wrong with my eyes).

Thanks so much for the encouragement. I feel like if it's not lupus then what IS IT?! Because I'm baffled. But the encouragement really helps, a LOT. Thanks so much.

 

[lazylegs]

Hi Rachel,

Several things jumped out at me when I read your post. The first is to keep the neuro/psych consult. These professionals are not judgmental and are used to helping people with chronic pain. They understand the frustration you are going through and can offer suggestions that might help.

Secondly you said you have low tear production. Have you been tested for Sjorgren's?

The next issue is you are functioning on no sleep. Even a healthy person can not function with no sleep. I know professors all seem to pile things on at once but you need to come up with a plan to get more rest.

The last is I agree with Lola. Get another opinion. Many of us had a difficult time getting a diagnosis and had to see multiple doctors.

Take care,
Lazylegs

 

[*~aurora~*]

No, no one will test me for sjogren's apparently because my ANA is negative. So I don't know what's going on.

I don't normally pull allnighters, but my roommate was pulling one and I couldn't sleep with her awake and stressed. Plus I wasn't feeling well and couldn't sleep.

Thanks for the support. I'll definitely seek a different opinion, especially knowing a lot of you had issues getting a dx. This doctor has major accuracy issues from what I found of reviews online, so I'm trying to stay positive. Going to hang with me friend and have a good time tonight.

 

[Lily]

Hi Rachel,

It doesn't sound like you got a terribly thorough assessment but if you have hypermobile joints then some of those muscle and joint problems would tie in with that. I can't really see a lot in your list of symptoms that are Lupus specific - of course some of them might be, but they could also be for many other reasons.

I'm afraid I'm with Clare on this one, a good thorough workup by an Endocrinologist would be in order, you do have a slightly off blood test there and some of your symptoms can be common in endocrine disorders so that seems like a good place to start whittling away at.

I have quite severe Sjogrens and it is a myth that there is an inability to produce tears, its the quality of the tears that are the problem, not the quantity.

Good luck and if the Endo reveals nothing then it's definitely a good idea to see another Rheumy. I would also go for the neuro-psych workup, they are trained well and may spot a problem that has a physical cause for some symptoms. If a psych cause is ruled out then at least you will never have them throw that back on you again and it will shut them up.

love
Lily

 

[pollianna]

Aww bless you, I can hear how tough it is for you right now. It can take such a long time to get some form of diagnosis. My Ana was weak positive but last set of bloods was negative and I definately have some form of autoimmune disease. Don't give up and don't start disbelieving in yourself. This is key. You know somethings going on and we know somethings going on so just keep going to the appointments until they find what it is. Ypu will get there in the end though it might not seem that way now....

I had over 10yrs without any help and I couldn't walk or make memories for a couple of yrs. I took each symptom in turn and tried to relieve what I could. You must sleep though ....

 

[Fairy]

Hi,
I've lost count of the number of moronic doctors I've seen - the best thing you can do for yourself (lupus or not) is find a doctor who'll keep trying to work out what's wrong with you. I've found the best ones will admit when they don't understand/know something, but then they'll make suggestions about how it can be worked out.

Keep plugging away at it, you'll get there eventually :hehe:

 

[spellbinder]

don't let go

hi rachel

i'm also sorry to hear that you are in such despair. i'm in a bit of funk myself these days. i have a dx but lupus still lets me know it around and i wonder why go thru this...but i do, god has me here for a reason.
its hard but don't get too discourged. it took me 20 years to get a diagnosis. i had the flu for 10 years. i went to doctor after doctor. my ana was neg. then pos. then low pos. but all of the clinical symptoms were there and finally my ana decided to catch up. blood work is funny. i thought and do have hep c. my doctors wouldn't do a hep c test cause my liver enzymes were normal. well after yelling demanding and threats he did the test and sure as i'm female it came back positive for hep c.

you didn't mentioned how many doctors you've gone to. sometimes it takes many doctors and years to get a difinitive diagnosis. ask anyone here. we all have gone thru "your just fine" and a pat on the head from your doctor.

keep the faith rachel...we all need faith what ever it may be.

hugs and kisses
spellbinder

 

[*~aurora~*]

Thanks everyone.

 

[Barb G]

Hi Rachel,

I recognize myself in much you wrote. I have been suffering for at least 20 years as well but think I may be near a diagnosis, largely because by blood tests are showing more than they have in the past and my current GP is trying much harder than past GPs who ignored me because they believed I was psychosomatic.

The heavy periods could be lupus related. Have you read the book Living With It: Why You Don't Have to Be Healthy to Be Happy by Suzy Szasz? She nearly died from lupus around 14 years of age and several times thereafter. She wrote the book to share her story. She developed problems with extremely heavy periods at a very young age. Her physicians treated the problem as lupus related and the problem was resolved fairly quickly. I highly recommend you read the book. Buy one if you can't find a copy through a library. Suzy is still alive and thriving as a professional academic librarian. You can find current info about her on the web.

Also, Flexeril can cause seizure-like episodes. I was prescribed Flexeril for the first time in Nov 2008 and shortly after developed bizarre spastic jerks first in my shoulders and arms, then legs, then abdomen, then neck/head, then facial muscles. I quit the drug and the jerks/spasms are less and less severe and happen less and less frequently. My rheumatologist referred me to a second neurologist for a second opinion because of them and the cervical dystonia or whatever it is that developed May 3, 2008 and persists. The discussion as to whether or not I have lupus and whether or not lupus could be causing CNS problems is part of the ongoing conversation now, between me and my physicians and between physicians. I just hope I have an answer soon --- I may no longer have health insurance by October because of the high cost of my medical care (or, more accurately, my attempts to get a diagnosis and treatment.)

Good luck. My thoughts are with you.

Barb

 

[LolaLola]

Rachel, I am glad to hear you are going out tonight. Hope you have a good time.
Dr. D'Cruz may be a good option for you as he is a very skilled Physician and is also good at getting GPs on his side to help with your care.
X Lola

 

[Clare.T]

Lola -Rachel is on the west coast of USA


Clare

 

[*~aurora~*]

East coast actually, lol, but if I'm ever in England I'd love to see Dr. D'Cruz!

The book sounds pretty good! When it doesn't hurt to read so much I'll try to get a copy... or get an ebook maybe.