Lupus diagnosis and symptoms

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peacesoul
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Date Joined Jan 2007
Total Posts : 2446
   Posted 9/8/2008 2:59 PM (GMT -7)   
How were you dx with lupus? Was it a clinical dx or did your tests show some activity? Did you all have a + ANA?
And what were the symtpoms that brought you to the dr to get the dx?
 
Thanks all
 
Jen
Moderator - Anxiety-panic forum
 
where we take it one panic attack at a time
 
 
 
The world breaks every one and afterward many are strong in the broken places


Bsime
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Date Joined Apr 2006
Total Posts : 1299
   Posted 9/8/2008 8:12 PM (GMT -7)   
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
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
 
Meds: prednisone 5mg, 50mg imuran, Lotrel 40/5mg, maxide 37.5/25mg, folic acid, potassium, aciphex 20mg, multi vitamins.
 
Maintain your optimism and you can beat the odds.
 
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller
 
 


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 9/9/2008 6:31 AM (GMT -7)   
Jen, it took me about 3 years from first symptoms for me to get diagnosed and mine was a combination of labs and symptoms (I had more than enough of the 11 criteria for diagnosis).  My very first symptoms were very vague though.  I had extreme fatigue, generalized pain, and severe brain fog and weakness.  I went to my pcp twice and on the second time she ran an ANA and it was positive.  I also elevated sed rate and crp. There was also a time when I consistently had protein in my urine. Aside from the labs, I have lots a specific lupus symptoms like the malar rash, mouth sores, fevers, hair falling out, swollen and painful joints, and sun sensitivity.

My first rheumy completely blew me off and I only saw him 2-3 times. My second rheumy put me on plaquenil and said my symptoms were "lupusy", but when I kept getting sicker to the point of having to quit my job, she wouldn't put me on any stronger meds. I took a big leap of faith and went to a 3rd rheumy recommended by someone on the forum and he diagnosed me and started me on prednisone and the two years that I have been seeing him are the healthiest I've been, although I still have some flares here and there.


Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



PattyLatty
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Date Joined Mar 2006
Total Posts : 2570
   Posted 9/9/2008 8:00 AM (GMT -7)   
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
Lupus, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, tricor, acifex, multivitamin, calcium w vit D, fish oil, aspirin


curlyhair
Veteran Member


Date Joined Jan 2005
Total Posts : 659
   Posted 9/9/2008 4:17 PM (GMT -7)   

Hi Jen,

I first went to the doctor because I was swollen with a lot of fluid. My nephrologist did a kidney biopsy and lupus activity was evident on the biopsy. I also had a positive ANA, but all other blood tests were normal. Over the next several years more and more symptoms started showing up; sun sensitivity, rashes, memory problems, mouth sores, joint pain, etc... Between my symptoms and biopsy I had no trouble getting a diagnosis. I have been given a DX of lupus by 3 different nephrologists and 1 rheumy. My ANA goes up every time it is checked, it started out at 1:320 and it's now 1:1280, but all other blood work for lupus is still normal. Hope this helps.

Sandy


DX: Kidney Disease, (? Lupus Nephritis) 2002
DX: Raynaud's Phenomenon and Lupus (SLE & Class V Lupus Nephritis) 2005
DX: Anorexia and Hypokalemia 2006
 
meds: plaquenil, amiloride, klor-con


peacesoul
Veteran Member


Date Joined Jan 2007
Total Posts : 2446
   Posted 9/10/2008 9:42 AM (GMT -7)   
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!!!!!!!!!!


Moderator - Anxiety-panic forum
 
where we take it one panic attack at a time
 
 
 
The world breaks every one and afterward many are strong in the broken places


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 9/10/2008 11:58 AM (GMT -7)   
peacesoul,

lyme causes lupus?

or

lyme causes (some of the) same symptoms as lupus?

They are distinctly different things....

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone(was 15mg, now 8mg), Cellcept, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 9/10/2008 4:23 PM (GMT -7)   

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


Lupus diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008
 
******
aspirin daily, multivitamin daily, Arthrotec 50mg twice daily, Meclazine 25 mg, as needed 4x daily, Hydoxychloroquine (plaquinil) 200mg twice a day, Metoclopomide 10 mg, 4x daily, Doxepin 50 mg one cap 4x day, Metoprolol 100 mg daily, Levothyroxine (synthroid) 50 daily, Amlodipine 5mg daily, Crestor 10 mg one tab daily, Lisinopril 40 mg, one tab daily, Omeprazole (prilosec) 40 mg daily, Plavix 75mg daily, promethazine 25mg x4 daily, Restasis one drop in each eye every 12 hours
 


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 9/10/2008 4:33 PM (GMT -7)   
 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
Lupus diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008
 
******
aspirin daily, multivitamin daily, Arthrotec 50mg twice daily, Meclazine 25 mg, as needed 4x daily, Hydoxychloroquine (plaquinil) 200mg twice a day, Metoclopomide 10 mg, 4x daily, Doxepin 50 mg one cap 4x day, Metoprolol 100 mg daily, Levothyroxine (synthroid) 50 daily, Amlodipine 5mg daily, Crestor 10 mg one tab daily, Lisinopril 40 mg, one tab daily, Omeprazole (prilosec) 40 mg daily, Plavix 75mg daily, promethazine 25mg x4 daily, Restasis one drop in each eye every 12 hours
 


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 9/10/2008 6:30 PM (GMT -7)   
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
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
 
Meds: prednisone 5mg, 50mg imuran, Lotrel 40/5mg, maxide 37.5/25mg, folic acid, potassium, aciphex 20mg, multi vitamins.
 
Maintain your optimism and you can beat the odds.
 
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller
 
 


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 9/10/2008 6:54 PM (GMT -7)   

Hey Bill,

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.
 
I don't think I have followed anyone's post well.  so much to read, so many people.  Heaven sent though.  at least to me.  the best thing I have done for myself in a long time, is to look for and find a Lupus forum.
 
You are pretty remarkable yourself Bill.  i admire your come back from what could have been the life of an invalid.  You could have given up, but you didn't.  YOu are an inspiration.  Started 2006 as a quadraplegic, and now you ski.  amazing.
 
Thank you for your response.  If acid reflux can do such damage, I wonder why medicare/medicaid will not pay for the prilosec, nexium, etc.  Maybe the medical people have not caught up with people like you yet.
 
Hester
Lupus diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008
 
******
aspirin daily, multivitamin daily, Arthrotec 50mg twice daily, Meclazine 25 mg, as needed 4x daily, Hydoxychloroquine (plaquinil) 200mg twice a day, Metoclopomide 10 mg, 4x daily, Doxepin 50 mg one cap 4x day, Metoprolol 100 mg daily, Levothyroxine (synthroid) 50 daily, Amlodipine 5mg daily, Crestor 10 mg one tab daily, Lisinopril 40 mg, one tab daily, Omeprazole (prilosec) 40 mg daily, Plavix 75mg daily, promethazine 25mg x4 daily, Restasis one drop in each eye every 12 hours
 


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 9/10/2008 6:59 PM (GMT -7)   
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
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
 
Meds: prednisone 5mg, 50mg imuran, Lotrel 40/5mg, maxide 37.5/25mg, folic acid, potassium, aciphex 20mg, multi vitamins.
 
Maintain your optimism and you can beat the odds.
 
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller
 
 


AnnieRae
Regular Member


Date Joined Nov 2006
Total Posts : 76
   Posted 9/10/2008 7:27 PM (GMT -7)   

Hi, I was diagnosed with a mild form of inflammatory arthritis and RA, after a very long time of symptoms that I never even recognized as anything at all until the pain got so bad I could hardly raise my arms above my head or get up from a chair, and the fatigue was incredible.  I had a lot of other symptoms too but really didn't know what was wrong for a very very long time.

Went to GP then referred to a Rheumy.  My GP did a Inflammatory Profile.  She ran two different ones a month apart and the last one was higher than the first one.  I took both to the Rheumy appointment and he also did the testing himself.  His results were negative.  But from all the symptoms and the previous testing he put me on Plaquenil and I was living on Ibuprophen and low doses of Predisone.  That was three years ago next this month.  He did not want to put a Lupus diagnosis on paper for insurance purposes and I agreed. 

The Plaquenil did wonders and I am doing quite well.  I go to the Rheumy every six months to monitor the medication and blood work once a year.  I have flares when I get stressed out, extrememly fatiqued, or a major changed in the weather, but for the most part am very thankful I am doing quite well.  I read a lot of the posts and consider myself very fortunate not to be in constant pain all the time like a lot of you.  I do have more good days than bad.

I really like the forum and it has helped me cope in so many ways.  I do not post very often.  Just the reading is very informative.  Thanks again to everyone for all the posts, they are very helpful and hopeful.   AnnieRae     :-)


There Is Always Hope


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 9/10/2008 7:29 PM (GMT -7)   
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. nono yeah
 
thank you for your response.
Hester
Lupus diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008
 
******
aspirin daily, multivitamin daily, Arthrotec 50mg twice daily, Meclazine 25 mg, as needed 4x daily, Hydoxychloroquine (plaquinil) 200mg twice a day, Metoclopomide 10 mg, 4x daily, Doxepin 50 mg one cap 4x day, Metoprolol 100 mg daily, Levothyroxine (synthroid) 50 daily, Amlodipine 5mg daily, Crestor 10 mg one tab daily, Lisinopril 40 mg, one tab daily, Omeprazole (prilosec) 40 mg daily, Plavix 75mg daily, promethazine 25mg x4 daily, Restasis one drop in each eye every 12 hours
 


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 9/10/2008 7:35 PM (GMT -7)   

Sorry.  we got off topic again.  did not purposely do this.  I will try to do better.

Hester


Lupus diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008
 
******
aspirin daily, multivitamin daily, Arthrotec 50mg twice daily, Meclazine 25 mg, as needed 4x daily, Hydoxychloroquine (plaquinil) 200mg twice a day, Metoclopomide 10 mg, 4x daily, Doxepin 50 mg one cap 4x day, Metoprolol 100 mg daily, Levothyroxine (synthroid) 50 daily, Amlodipine 5mg daily, Crestor 10 mg one tab daily, Lisinopril 40 mg, one tab daily, Omeprazole (prilosec) 40 mg daily, Plavix 75mg daily, promethazine 25mg x4 daily, Restasis one drop in each eye every 12 hours
 


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 9/10/2008 7:56 PM (GMT -7)   

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


Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
 
Meds: prednisone 5mg, 50mg imuran, Lotrel 40/5mg, maxide 37.5/25mg, folic acid, potassium, aciphex 20mg, multi vitamins.
 
Maintain your optimism and you can beat the odds.
 
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller
 
 


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 9/11/2008 6:28 AM (GMT -7)   

Hey Bill,

I don't want to have Barrett's esophagus.  Already have a cancer doctor who fusses at me for not getting in to see him often enough.  What he and other doctors do not seem to realize is that I can't afford more than two medical trips a month.  and right now Lupus is the most important, because it is Lupus making me sick at the moment, not breast cancer.  the cancer center was so good to me when they were giving me my daily radiation therapy.  They believed me when I told them I had lupus, and treated me different because of it.  When my skin started to blister, they said Lupus was causing it, and stopped my radiation treatments for a week.

I just want the medicare part D to treat all its patients the same, in all states.  All people do not get well after 14 days of prilosec.  some people never stop having heart burn, and acid reflux.  I assume that the hiatal hernia has a lot to do with this.

And I don't want to have that esophagus test either.  My mother had that done.  i remember.  I am too chicken hearted maybe to add another thing to my list of medical stuff.  But I might have to.

Thank you so much for your response

hester


Lupus diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008
 
******
aspirin daily, multivitamin daily, Arthrotec 50mg twice daily, Meclazine 25 mg, as needed 4x daily, Hydoxychloroquine (plaquinil) 200mg twice a day, Metoclopomide 10 mg, 4x daily, Doxepin 50 mg one cap 4x day, Metoprolol 100 mg daily, Levothyroxine (synthroid) 50 daily, Amlodipine 5mg daily, Crestor 10 mg one tab daily, Lisinopril 40 mg, one tab daily, Omeprazole (prilosec) 40 mg daily, Plavix 75mg daily, promethazine 25mg x4 daily, Restasis one drop in each eye every 12 hours
 


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 9/11/2008 7:40 AM (GMT -7)   
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
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
 
Meds: prednisone 5mg, 50mg imuran, Lotrel 40/5mg, maxide 37.5/25mg, folic acid, potassium, aciphex 20mg, multi vitamins.
 
Maintain your optimism and you can beat the odds.
 
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller
 
 


peacesoul
Veteran Member


Date Joined Jan 2007
Total Posts : 2446
   Posted 9/11/2008 8:56 AM (GMT -7)   
Lynnwood said...
peacesoul,

lyme causes lupus?

or

lyme causes (some of the) same symptoms as lupus?

They are distinctly different things....

There is not enough reseach into Lyme to answer this question with certainty, but some lyme dr's and some rheum are starting to see a definite link between lyme and lupus and ms and many other auto immune illness.
 
They actually are not different at all. The symptoms are 99% the same. Lyme boards (not just the ones here) are laden with lupus patients like myself who were first dx with lupus then discovered they had lyme.

Again, there needs to be conclusive research into all this. But after all the lupus research, dr still have no idea what lupus is or ms or fibro or how to treat it
 
 
But anway, this thread is not about lyme vs lupus
Moderator - Anxiety-panic forum
 
where we take it one panic attack at a time
 
 
 
The world breaks every one and afterward many are strong in the broken places


peacesoul
Veteran Member


Date Joined Jan 2007
Total Posts : 2446
   Posted 9/11/2008 9:05 AM (GMT -7)   
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
Moderator - Anxiety-panic forum
 
where we take it one panic attack at a time
 
 
 
The world breaks every one and afterward many are strong in the broken places


Tá mé breá
Regular Member


Date Joined Aug 2008
Total Posts : 140
   Posted 9/11/2008 8:49 PM (GMT -7)   
why do really good rheumies seem to be such rarities?
43 yr old mother of 6 grandmother of 1 going on 2!
dx 2006 - autoimmune issues, arthritis, 01/2008 - myelofibrosis. as of 08/08 testing continues signs point to Lupus. (family history - mother RA/Lupus).

symptoms - malar rash, mouth soars (in and out), joint pain, extreme fatigue, migraines, heart pounding on light activity.

rx-cymbalta, propranolol, clonazapam, prednisone, progesterone cream, supplements - b6, b12, flaxseed oil, c.

"All we have to decide, is what to do with the time we are given" ~ Gandalf


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 9/12/2008 5:44 AM (GMT -7)   
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.
Lupus diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008
 
******
aspirin daily, multivitamin daily, Arthrotec 50mg twice daily, Meclazine 25 mg, as needed 4x daily, Hydoxychloroquine (plaquinil) 200mg twice a day, Metoclopomide 10 mg, 4x daily, Doxepin 50 mg one cap 4x day, Metoprolol 100 mg daily, Levothyroxine (synthroid) 50 daily, Amlodipine 5mg daily, Crestor 10 mg one tab daily, Lisinopril 40 mg, one tab daily, Omeprazole (prilosec) 40 mg daily, Plavix 75mg daily, promethazine 25mg x4 daily, Restasis one drop in each eye every 12 hours
 

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