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I am new here. I have not been diagnosed yet.... I really am getting frustrated here. I have had so many symptoms of lupus. I have lost 20 lbs in 1 1/2 months, really thirsty, aching joints, chest pains, mouth ulcers, anxious, weak legs, fatigue, protien in urine, rash that comes and goes in a matter of min or days. Does this sound anything like lupus. All the Dr. wants to do is put me on anxiety pills. I know something is wrong with my body. I just don't know what it is. I have went to a Internal Medicine Dr and he says no way it's lupus. My GP says it sounds like an autoimmune diesease of some sort. Went to a Rhummy and he says I am not a typical lupus patient. Must be Viral. 1 1/2 mths of viral... ?????? I don't under stand. Lupus screening came back neg. ANA was neg. Can I trust this? I cant stand the chest pains and all the aches I have. Constant sore throat and lots of mucas drainage. Anyone have this? I am about at the end of my ropes. No one can tell me whats wrong with me. I even had an african American Dr. tell me it's not common in White women. So she didn't even want to hear about those symptoms. I hope it's not lupus, but what if they are over looking something..... Sorry how long it is.. I just need to vent to someone... I hope you all have a good day... BTW.. .my name is Vicki.. I live in the United States. In Arkansas. I am married with 4 children... it's hard dealing with all the fatigue when you have small ones.. I push myself all the time... Is leg cramps a symptom of lupus? just wondering... I have the worse leg cramp in the right calf.... again... thanks for listening...
 

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Hi Vicky,
have you had blood tests done? Including diabetes and thyroid disease?

Cassie
 

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Discussion Starter · #3 ·
Yes... both have came back neg. . I feel as if my body is shutting down. I have little red bumps that don't hurt on my lower legs. I know I am not going crazy. I just wish they would find out whats wrong with me...Thanks for the reply.
 

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Hello Vicky,

It is clear that something is going on for you. You know your body and that's what you have to keep in mind!

It sounds like your GP is behind you and that is excellent as his support is invaluable in trying to find out what is going on.
Unfortunately auto-immune diseases are very complex and can be hard to diagnose. Although a rheumatologist is definitely the right doc to see, not all are experienced in auto-immune diseases.

Having negative ANA results will always be difficult for diagnosis as it does clinch the diagnosis for many docs. However there are people who have been diagnosed without ever having had positive ANA but, in fact, only about 5% of lupus patients never present positive ANA. In that case a skin biospy can be helpful in obtaining a diagnosis so it can be useful to see a dermatologist.

All symptoms you have should be well documented and any rashes or "visible" signs that you have should be photographed and taken with you to appointments as they have a nasty habt of disappearing on the wrong day.

A very experienced lupus doctor will sometimes make a diagnosis of lupus or maybe Undifferentiated Connective Tissue Disease (which would be treated basically the same way) without positive ANA.

Take a look at the alternative criteria for lupus diagnosis in the "not yet diagnosed section" and see if anything there seems to fit for you.

The only other things is that you mustn't give up. You just have to keep plodding along to the docs until you find out what is going on.
It may or may not be lupus (for example sjorgens fits many of your symptoms) but diagnosis will still be hard if it is auto-immune.

There is also a "find a doctor" section here on the boards which can help you to find a specialist lupus doctor in your area.

And as for the comment about not common in white women.....well, it may be slightly more prevalent in some areas and origins but a lot of us are white, indeed some are very white as we studiously avoid the sun :lol:

Keep us posted,
Katharine
 

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Hi Vicki,

I'm sorry your feeling so bad at the moment. Don't worry about the rant, we all have to let off steam sometimes.
Katharine has given you some really good advice, especally the part about not giving up.!!!
I know it's hard with young children but please try to rest as much as you can. Have you got anybody who could help you with the house and children?
I can't really offer much more advice but I am sending lots of hugs your way.
Take care of yourself.

Elle x
 

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Discussion Starter · #6 ·
I just want to thank you all for your nice comments and good advice. I am presently crying... I feel as if everyone thinks I am crazy. You all seem to understand. I go to bed with the chest pains and think will this be my last night. I am having blood pressure problems with the bottom number spiking to 106. Dr. says it is related to pain. DUH.... I am at the bottom of my rope and don't see myself being able to climb out. I do thank you all. I wish you all the best and again I am not giving up. I wonder why the darn rashes want to dissapear in a flash? It's almost as if they don't want to aide in diagnoses... ;)
 

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Vicki, please keep strong and don't give up!

When are you next visiting your GP or Ruemi? That BP is very high,are you on meds - if so, have they been adjusted.

Are you on any other meds other than the ones suggested for anxiety!


I'm in chat at present if you can access it! Take care!

Love Lesley
 

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You certainly have enough signs and symptoms indicating there is a problem; it is often much more difficult to get an autoimmune diagnosis (warranted or not) without any positive auto-antibody bloodwork though. How high is the protein being spilled? Is your bloodwork entirely normal or are some things slightly off (often the only way you will know this is if you get a physical copy of the bloodwork instead of relying on a doctor's summary). If you're spilling +1 protein or more, then you really should be referred to a nephrologist. Be cautious of what medicines you take as they can be hard on the kidneys in the meantime (especially NSAIDs like ibuprofen/Motrin/Advil)

For the rashes, take pictures of them. Then you can show that to the doctor as they definitely do make a habit of disappearing just in time for a doctor appointment it seems! Many people here have been diagnosed by dermatologists who biopsy the rash - especially those with negative ANA. In some people, the ANA is not positive while the SSA antibody is positive (which is an antibody highly associated with sun sensitive skin rashes).

I have suffered from constant drainage down my throat and chest pains with a viscious months long cough. I'm not entirely sure it was due to lupus - this occurred long after I had been diagnosed with lupus. I went through a **lengthy** workup with allergist doctor (no allergies), ENT doctor (had no answers) and my GP as well as my rheumy. Eventually I was placed on the right antibiotic which cleared it up but only after my 1 year old daughter was diagnosed with a very resistant bacterial ear infection & an MRI showed gunk in my sinuses --- so a GP placed me on the same antibiotic as her and FINALLY it was gone. It was murder going through all that - so you have my deepest sympathy.

The chest pain could be costochondritis (especially if you have a bad cough associated with the drainage). There are other causes too of course.

Definitely don't give up, do your best to rest and think positively. Post in the find a doctor section or do a search of the website for doctors in a major metropolitan area near you. Best of luck that you find some answers, some treatment, and a good doctor soon. Please let us know how things go...

(((hugs)))
 

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Dear Vicki, The ANA can take time to show positive. Also , although SLE is more common in certain races, it is certainly not that rare in white women. (My Daughter and myself for example)
I can appreciate how terrible you feel, for a lot of us diagnosis was hard and many Docs. and even some Consultants are pretty ignorant about Lupus.
A diastolic blood pressure of 106 is high and I don't feel pain would fully explain it.

I am no expert but I can say you need a good Consultant and some help with medications even if they take a while arriving at a diagnosis. (Sometimes time is needed) Remember if it is Lupus it will affect things like life and health insurance, so maybe sort them out now if you can.

Best Wishes,
and stay strong.
xLola
 
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