Is this Lupus?

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Perksie
Regular Member


Date Joined Jan 2009
Total Posts : 51
   Posted 4/10/2012 7:19 AM (GMT -6)   
Hello,

Not sure which forum to post this in, so I thought I'd post here.

I've been having numerous symptoms (on and off), been through numerous doctors, and it all led nowhere.

Symptoms:

- Severe hand pain (comes every 6 or so months, then goes. Lasts for several weeks). I can still pick up 50kg dumbells in each hand, so my hands aren't weak, just have 24/7 pain. Saw a Rhuematologist, got x-rays, blood test. All negative. x-rays show inflammation, but couldn't be explained. Was told to "suck it up" and let it pass. Pain isn't necessarily symmetrical. They alternate in intensity, but pain is pretty bad.
- Very mild rash on cheeks near nose. Never goes away, sometimes looks worse, most of the time it isn't too bad. Dermatologist told me it was eczema and gave me a cream...helps a bit, but comes back as soon as I stop. Have had this for about 10 years.
- Occasional pleurisy (I think). I've had it about 5 times in the last year. I notice it when riding hard on my bike. Usually only lasts up to 24 hours. Feels like an intense pain when my lungs are maximally expanded.
- random small rashes that scab over. Usually disappear with a topical cream. Haven't had any recently.
- Throat constantly feels like it is closing in. It is very scary at times, but worse at night. Have had a MRI on my neck which didn't show anything
- Bad GERD. Had it for 5 years now. Have had to give up rugby because of this as i can't eat enough to maintain size. PPI's have made it a non-issue.
- Very boney, crooked fingers with big mid-knuckle joints. Probably nothing, but I was thinking I had RA for a while when I was getting hand pain.
- Reynauds phenomenon. Not too bad...my fingers go bluish, but never deep blue. I wear gloves when cold and don't have any further issues.

That is about it. I've been in circles, told I am a hypochondriac, spent lots of money getting expensive tests, etc. I've had that many blood tests that they stack to make the width of a couple of magazines.
I've been tested for lupus & RA, and was recently told that I should get further testing for scleroderma.

I have given up...but if you have any ideas, I'd love to hear them. You might help me narrow it down.

Thanks in advance for your help.

Adam

AngelinaATF
Regular Member


Date Joined Jan 2012
Total Posts : 135
   Posted 4/10/2012 10:51 PM (GMT -6)   
Wow Adam, you have been thru the ringer as many/most of us have been.
The hand pain is very familiar to me as is the Raynauds,GERD, rash (now) but these auto-immune diseases are so complicated that they can hide for yrs without diagnosis! I know & understand your frustration! It's very isolating & almost embarrassing (which you should not be at all) ..but that's what it's like for me as well. I felt like a hypochondriac for awhile, questioned my sanity! (And I'm a pharmacist so I was expected to help sick ppl - not be 1 of them! Needless to say, my profession was far from understanding & I haven't been able to work since 07).
Anyhow, you may have to keep getting ANA tests every few months til u get a positive. Also, have u thought of Fibromyalgia? These diseases all "hide" together!
Keep us posted as to what you find! Don't give up..try to have a positive attitude, as hard as it is! Also, if you havent already, read "Power Healing" by Dr. Aha - & try meditation - it helps!
Angelina.
age 41, Mom of 2 great kids (10 & 7), Diagnosed in 2007
MCTD(LUPUS), RAYNAUDS, FIBROMYALGIA, L4L5 disc herniation, fracture in L3 fro EPIDURAL in childbirth
Meds: Prednisone, Nifedipine, estropipate, cyclobenzaprine, Cymbalta, sulfasalazine, gabapentin, hydrocod, fentanyl patch, methotrexate - MTX (on hold), clonaxepam (sleep), vit D, PRILOSEC, Transderm Scopalamine, Vit Bcomplex

AngelinaATF
Regular Member


Date Joined Jan 2012
Total Posts : 135
   Posted 4/10/2012 10:53 PM (GMT -6)   
Oops - That was supposed to say the book by Dr SHA! Sorry! :)
Angelina.
age 41, Mom of 2 great kids (10 & 7), Diagnosed in 2007
MCTD(LUPUS), RAYNAUDS, FIBROMYALGIA, L4L5 disc herniation, fracture in L3 fro EPIDURAL in childbirth
Meds: Prednisone, Nifedipine, estropipate, cyclobenzaprine, Cymbalta, sulfasalazine, gabapentin, hydrocod, fentanyl patch, methotrexate - MTX (on hold), clonaxepam (sleep), vit D, PRILOSEC, Transderm Scopalamine, Vit Bcomplex

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 4/10/2012 11:01 PM (GMT -6)   
If you wonder if it's Lupus, you'll need to see a Rheumotologist -- and first you probably want to read up on the "4 of 11" symptoms used to diagnose Lupus. It is *not* uniquely identifiable by just a blood test.

Read the diagnosing-lupus link in my signature!
Hope you find some relief soon,
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

Perksie
Regular Member


Date Joined Jan 2009
Total Posts : 51
   Posted 4/10/2012 11:07 PM (GMT -6)   
Thanks for the help guys. I've learnt to deal with it and accept it. It would just put me at ease being able to "label" it as something so I can move on with my life.

Thanks to all,
Adam

NeedSomeHelp456
New Member


Date Joined Jan 2016
Total Posts : 10
   Posted 4/10/2016 1:26 AM (GMT -6)   
Perksie, I am sorry about this other situation you have but I am contacting you because a post you wrote on about gastritis.

Did it really take two years to reverse?

I am approaching eight months and am worried I am past the window of opportunity of a reversal. Thanks, and best wishes to you.

Perksie
Regular Member


Date Joined Jan 2009
Total Posts : 51
   Posted 4/10/2016 1:36 AM (GMT -6)   
Wow, blast from the past.

To clear this all up, I found out I had Crohn's and due to the crohn's, various other side effects, including:
fructose malabsorption and a bad reaction to amines.

If I stay clear of the amines, the rash on my face goes, and I get no scabbing. If I eat too much amines, the eczema comes, followed by itchy leasions that scab over. If I eat a super amount of amines, then the hand pain comes along with the pleurisy symptoms.

The Reynauds, doesn't particularly bother me, and it's mild.

Gastritis- easy one! Wei Tai granules. It's a Chinese medicine that comes in packets and you drink it like tea. It's not cheap, but it works miracles. The one I took is the brand 999. My work colleague had gastritis for almost six months...I convinced him to buy some and said I'd pay for it if it didn't work... gastritis gone in two weeks!

Please do yourself a favour and get some.

NeedSomeHelp456
New Member


Date Joined Jan 2016
Total Posts : 10
   Posted 4/10/2016 2:14 PM (GMT -6)   
Perksie,

I have "reactive gastropathy" (AKA chemical injury to the stomach lining) from steroids and antibiotics. I have been trying to heal for eight months. I am getting to the point where I am almost convinced I will never make further improvements.

I will look into the granules, but in all honesty I feel very little confidence anything will help me. I think that would be a miracle. Do you really believe gastritis can heal? You said yours took two years to heal?

I worry after I've passed eight months it's looking not good. I think mine is a form of erosive gastritis, which is said to be irreversible. My GI doctors really don't say much and I don't know what to think. I am very confused and worried this is never going to get better for me.

Perksie
Regular Member


Date Joined Jan 2009
Total Posts : 51
   Posted 4/11/2016 5:06 AM (GMT -6)   
NeedSomeHelp456 said...

I will look into the granules, but in all honesty I feel very little confidence anything will help me. I think that would be a miracle. Do you really believe gastritis can heal? You said yours took two years to heal?

I worry after I've passed eight months it's looking not good. I think mine is a form of erosive gastritis, which is said to be irreversible. My GI doctors really don't say much and I don't know what to think. I am very confused and worried this is never going to get better for me.


Mine didn't heal until I took Wei Tai. I had a bland diet, no alcohol, coffee, citrus, tomato, onion... etc and it still didn't heal. After Wei Tai, it just healed. Similar to my work colleague- healed within weeks of taking it.

IMO, it's far too coincidental- I'm 100% convinced it healed the both of us. Anyway, you have nothing to lose and everything to gain, so I think it's worth a try.

The majority of doctors are rubbish when it comes to GI stuff. I had to demand a colonoscopy to find out I had crohn's. Pretty sad seeing as I went to some of the best GI specialists.

Anything can heal... the body is designed to heal itself. Don't give up giving up.
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