Lupus diagnosis and symptoms

Jen,

Low platelets and mild anemia were the first symptoms but it was many tests and many months before lupus was suspected.  by then I had a faux gout attack that quickly morphed into a kidney problem....proteinuria with tremendous swelling of feet, ankles, legs and later arms and hands.  Joint pain, muscle weakness....

By then it was diagnosed as lupus and 2 months later as mctd (lupus, scleroderma and polymyositis).

My blood work had shown moderately low platelets and mild anemia for at least 15 years before the first physical symptoms so I assume it was lurking and waiting for the right trigger.

Bill

Jen,

I had vague symptoms for years. about twice a year, or whenever I would go to the tropics and get too much sun, I'd spend a couple of weeks running a low grade fever, feeling flu like symptoms, having extreme fatigue, headaches, and a general feeling of malaise. I had a red butterfly over my nose and cheeks and an occasional sore or two on my chest. I also had an allergy to the sun. The little flares were always the same and I could count on them happening one, two or three times a year. My doctor would run tests and find nothing. After a few years he sent me to a rheumatologist who suspected lupus and ra but blood tests were negative. He wrote both on my chart, but it was it wasn't until 10 years later when I had a 3 month flare and many more symptoms and couldn't get out of bed that my ANA was positive and my complement levels were negative. Like Bill, I believe it was lurking for about 20 years.

It was extremely frustrating. There was no one to talk to about it. My mother had lupus but was not educated about it nor did she have any interest in learning more. When the internet became available I would lurk around on forums but I didn't feel I belonged because I didn't have a dx so I really felt alone. During part of that time I was married to a narcissist, and later I was a single mom, so some of the stories of my friends on this forum are really familiar to me.

This is getting off topic, but I must add that one of the most important outcomes of this forum is to help people who are in what we call diagnosis limbo. They believe they have lupus but don't have a diagnosis from their doctor. I was there for years and wish I had been here for support.

Hope this helps.

Pat

Hi Al, thanks for the input

The reason I'm asking is I still, in my own mind, am not even sure what I have. I was dx with Lupus in April 07 and then dx with Lyme Aug 07.
My Rheum feels I have lupus but b/c he doesn't see me close to crippled, is not so sure.

I have had a positive ANA for 15 yrs and had major flu like symtoms. I was able to go undx and was able to function until April 07. I changed my diet completely and started working out with weights 6 days a week and I got somewhat better.

I would have "flares" many once every 3-4 months then.

Then fast forward to April 07 and my symtpoms were getting worse. Hair loss, wekaness, fatigue, + ana (still), vertigo, joint pain, chest pains, headaches and just general malaise.

Because I had a normal sed rate and not a very high inflammation marker, my rheum is not sure. He says I'm not a "typical lupus" patient.
He also told me most of his lupus patients are very unhealthy so maybe that's why he sees lupus patients who seem "crippled"

Of course my lyme dr feels the lyme causes the "lupus"

Sick of all this!!!!!!!!!!

Hey Bill,

I am hoping that someone has not already asked this.  I did not read all the responses before I replied to you.  afraid I would forget to ask you the question.

What is barrett's esophagus?  what are its symptoms?

thanks

Hester

Barretts is a condition where acid reflux has caused changes in the cells in your lower esophagus and produced acid resistant cells.  These unfortunately are precancerous. 

Barretts is often associated with poor diet, heavy drinking but in my case it is the result of my muscle disease, polymyositis, which attacks skeletal muscles.  It weakened the spincter muscles at the top of my stomach and caused the acid reflux and then Barretts.  Lying in bed in hospitals and at home for a year certainly contribued.

Just another speed bump in my recovery.  I am at almost 3 years so I hope the danger is decreasing.

If you have not followed my posts I have mctd which is lupus, scleroderma and polymyositis.  Polymyositis (pm) crippled me and I started 2006 as a quadriplegic and could not swallow. I lost 40 lbs of muscle mass in a week.  No one thought I would walk or swallow and fortunately they were wrong.  My recovery has been remarkable and I am playing golf, skiing, and leading an active life again.  Not as good as before getting sick but life is good.

Bill

Hester,

I am on medicare and it does pay for prescription meds.  Was on aciphex and they wanted me to switch to the generic which my GI doc agreed was OK. 

Lower esophagheal cancer is not something easily treated and anyone with acid reflux, gerds, or barretts needs meds and possibly diet changes. 

Everyone has occasional acid reflux but if your docs have good reason to prescribe meds then insurance will pay. 

Bill

I am on medicare and it does pay for prescription meds.  Was on aciphex and they wanted me to switch to the generic which my GI doc agreed was OK. 

I have talked to my gp, but he has to get Nexium, etc. reauthorized, and can't get past his office help to ask him why.  I was able to get prilosec for three months, but they only let me have that for three months, and now will not refill the prescription.  I have talked to Silver script, my selected Medicare D provider, and they tell me that if it has been authorized before, I will most likely get it authorized again, and told me to tell the doctor to call them.  and that is the problem maybe.  thinking about asking my rheumy to prescribe it for me.  He seems to have more reliable office help.

But if you get it using medicare than I must be able to get it.  Medicaid pays for more than Medicare D does, but they would not approve it either.

Acid reflux is bad for me.  Heartburn is painful, but the acid reflux wakes me up at night, unable to breathe because the acid has been breathed into my lungs.  and then I get congested for days or weeks.  they diagnosed me with COPD.  I don't believe I have COPD,  because I do not get congested until the acid reflux is breathed into my lungs.  I have trained myself pretty good about waking up before I breathe it into my lungs.  but sometimes I don't wake up fast enough.  I sleep with as many pillows as I can.  and sleep almost setting up all the time.

But your post gives me more ammunition.  I can tell the doc about this person that I know that still gets acid reflux meds using medicare part D, and if he can get it so can I.;)

smiling to myself as I write this, thinking that maybe the holier than thou (sometimes) medical people would not let us congregate online, if they knew how much trouble we can be, with support from our own kind.

thank you for your response.

Hester

Keep in mind that I had a diagnosis of barretts after an edoscopic exam and biopsy.  Had 2 more after the initial one and due to get one this fall. 

Bill

Hester,

I just noticed that you are already taking a proton pump inhibitor, omeprazole, that is prescribed for acid reflux, gerds and barretts.  If you continue to have acid reflux elevate your head while sleeping and look into dietary changes. 

By the way, an endoscopic exam is nothing.  They give you a twilight anesthesic and you feel and remember nothing.

Bill

Serina said...
 He says I'm not a "typical lupus" patient.

I would like to ask your doctor what the *&* is a typical Lupus patient?  Just this one forum that I am on, this one, proves there is no "typical" Lupus patient.  And you know I bet when kids get measles and respond to it in different ways, that they are not typical either.

Sometimes a child gets chicken pocks, and only one bump shows up.  Is the kid making it up?

Why do they not listen to us?  Do they think we are lying, making it up as we go along?  Who in thier right mind would ever ever wish to have Lupus?  doesn't make sense.

I hope you can find another doctor who will listen to you.

Hester

My Dr is one of the best Rheum's in Montreal. He runs the lupus clinic. He listens to everything I have to say.
He answers all my emails and has listen to me when I was dx with Lyme.

He could have gotten into trouble, but rx'ed me all the abx I needed because my Lyme dr is in the US and I cannot fill rx's from the US. He also consulted with my US DR to see how he can help even more.

He also reads all the research I find on lupus/lyme and consults with me on what I found and how maybe he can help his other patients with the info I have. 

He's never rolled his eyes or belittled me. He's been my savior and trying very hard to figuue out, with me, what is wrong with me.

I'm not one of his typical lupus patients so he's baffled, as am I.

In no way does he think I'm making anything up. I'm a very credible patient and he treats me as such

He answers all my emails and has listen to me when I was dx with Lyme.

Amazing.  Never thought about sending emails to a doctor.

I always leave with the belief that all of my doctor are really not listening.

Never thought either of this forum reaching out to people who are not in the united states.

you best hold onto this doctor.  He is amazing.  I don't talk much to my doctors.  Number one reason for that is that I don't talk much.  i can write reams of paper, but speaking is not my best quality.  this is why it was a real godsend advice that I found on Lupus Resources instructing me to write down a log of symptoms. 

I am learning though from this group of people.  I want to know what is wrong with me and find a treatment for it.  and I think I have.