Not quite a diagnosis yet

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New Member

Date Joined May 2007
Total Posts : 2
   Posted 6/22/2007 8:11 PM (GMT -6)   
 Hello everyone!!  I was having problems with my ankles and feet swelling beyond recognition, and hurting so bad that I had to literally crawl to the bathroom in the AM.  Went to my doctor 3 weeks in a row, was told it was all weight related and that I needed to start walking.  Well, the reason I was there was because I couldn't walk.  Finally I couldn't take it at work one day and went to ER.  Doctor took one look at my feet and ordered chest x-rays, and all kinds of blood work.  All test results  and symptoms point to sarcoidosis.  Have another appointment with a ruematoligist (sp) for more testing.  X-rays did show masses in my lungs. 
  This is scary.  When I read what this disease is and could do, I just sat down and cried.  I was kind of hoping for something like heel spurs or a stress fracture in my foot,  not anything like this.  It has only been a week, so I am still trying to get over the whole shock of this. 
  Like I said they haven't completely diagnosed me yet, but are 98% sure this is what I have.  I would love to be able to talk to some of you, someone who understands the shock of have a sickness like this.  They did also mention Lupus, I haven't read a whole lot on that, I don't think I can take too much more in right now. 
  Doctor has put me on prednisone, hydrocodone, and motrin 600 for pain.  Swelling went down overnight, but the difficulty in breathing is still there.  Could have alot to do with the stress of the whole thing. 
  Again I would love to hear from some of you, and get your input on this .  Have a wonderful day!

Veteran Member

Date Joined Oct 2004
Total Posts : 2244
   Posted 6/22/2007 8:51 PM (GMT -6)   
Hi and welcome. I am sorry you have been in so much pain but glad you found us. This is a great place filled with wonderful, caring people that are here to help others.

I don't know anything about sarcoidosis but remember how scared I was when I began feeling ill and going to doctor after doctor and having a problem finding one that would listen to all of my problems and take me serious! It sounds like your doctor is on top of things by getting you on some meds to help with the pain, I pray they kick in soon and begin helping you! Please keep us posted on how you are doing and ask more specific questions you may have about lupus. Here is a good website to check out:

Take care and you are in my prayers.

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's 1999, Celiac Disease (AKA: gluten sensitivity) 2003, Raynaud's 2004, Lupus 2005 and Sjogrens 2006
Meds: Imuran, Plaquenil, Flexeril, Piroxicam, Levoxyl, Folic Acid, Magnesium Citrate and magic mouthwash (as needed for mouthsores)

Veteran Member

Date Joined Dec 2004
Total Posts : 8198
   Posted 6/23/2007 5:14 PM (GMT -6)   
Hi Hurtinmom,
   Welcome to the forum. I'm sure you are scared right now...((Hugs)). It is natural to be afraid of the unknown. I have heard of sarcoidosis and from what I remember it is treated about the same way as lupus.
  When do you see the doctor again about your lungs? Are they ordering a CatScan of your lungs to look at the masses further? Sorry for the questions, lupus attacked my lungs awhile back and I had nodules, infiltrates and scars. When I had that problem my legs, feet and ankles swelled bad too. They called it lupus Pneumonitis and I was treated with cytoxan infusions that cleared it up in six months.
   Please ask all the questions you want. This is a great group that will help you in anyway they can. Please keep us updated and take care. You will be in my thoughts and prayers.
 Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Sensory Polyneuropathy
mirapex,advair,foxamax,donnatal,folic acid.
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 6/23/2007 6:26 PM (GMT -6)   
Hi hurtinmom, I also wanted to welcome you. First let me say I am so sorry for what you are going through. Trying to take everything in can be very scary and overwhelming. Like Babs, there are others here with lung problems, so they can be more help than I can about some of these things.

I hope you don't have to wait too long to see the rheumatologist and that you can get some more definite answers. Please feel free to ask any questions you have and also know that we are here for you anytime you are having a rough day or you are feeling scared. I think you will find a lot of support here.

Take care
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 25mg; Neurontin 200mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops



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Veteran Member

Date Joined Dec 2006
Total Posts : 2818
   Posted 6/23/2007 9:04 PM (GMT -6)   
Hi hurtinmom, I'm so sorry this is happening to you. I think all of us understand the fear that goes along with these disease. It's overwhelming. I think the first doctor that saw you was an absolute quack! I understand why the ER did those test. My legs swell up also. from my klnees to my toes. So bad I can't put my shoes on. The feet stretched so bad so fast that they bled. I also have had congestive heart failure from the fluids building up. I have bad lung problems. So they watch for the stuff so they fluid doesn't build up in the lungs and around the heart. Which is what CHF is. It's not actually heart failure. Anyway now they I have scared ya half to death. I have had lung problems for years and I'm actually doing pretty good. except for the lousey weather and humidity. That can also make it hard for you to breath. This is a tough time of year for lungs.

Anyway welcome again
God Bless
Lupus, possible Crest, COPD, Cervical Cancer survivor. Osteoporosis
Prednisone 5mg, Plaquanil 800mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax.5mg
When things are really dark look up. You can see the stars.

Veteran Member

Date Joined Mar 2006
Total Posts : 2570
   Posted 6/25/2007 1:12 AM (GMT -6)   
Hurtinmom, I'm so glad you found this forum because I think there a lot of wonderful people here who'll be able to give you moral support and encouragement as well as information. It has become my home away from home.

44 years ago I was a skinny healthy 14 year old and my left foot swelled to over twice it's size. It was so painful to the touch that I refused to put any weight on my heel, and my mother put a cardboard box under the sheet on my bed so that the sheets wouldn't touch my foot. I eventually had exploratory surgery. The doctors found nothing but sent inflammed tissue to the Mayo Clinic and they also found nothing. It went away on it's own. When I mentioned this to my current rheumy, she shook her head and said, "you've probably had lupus all your life." Sometimes it takes years for doctors to make diagnoses. It's unfortunate and extremely frustrating.

I'm so sorry you're having so many problems and I do understand how scared you are. If it's any consolation, I can deal with my diseases better now that I know what they are than I could prior to my diagnosis.

We will be here for you, hurtin, and we do understand what you're going through. I hope you'll stay in touch with us and let us know how you're doing. This is a wonderful family that helps keep me sane.

I hope this next week is a happy one for you.

Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept 1,000mg, neurontin 1,200 mg, prednisone 5mg, plaquenil 400mg, synthroid .15mg, triamterene 37.5mg, tramadol prn, lunesta 6 mg, actonel, tri-est (compounded estrogen) 7.5 mg 2xmultivitamin, calcium w vit D, fish oil, aspirin

Veteran Member

Date Joined Mar 2006
Total Posts : 2570
   Posted 6/25/2007 1:16 AM (GMT -6)   
Hurtin, this just triggered another memory. When I was in college and after I got out, I walked a lot and I can remember at least three times that my feet swelled so much that I couldn't walk. It didn't occur to me to go to a doctor so I did nothing. At one point I was backpacking for three months and walked myself silly. When my feet would swell, I'd take a day or two off from walking and they would get back to normal. They haven't swollen up like that since. I'll never know what the cause was, but I have my suspicions, as does my rheumy. The good news is that whatever I had has disappeared for over 35 years.
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept 1,000mg, neurontin 1,200 mg, prednisone 5mg, plaquenil 400mg, synthroid .15mg, triamterene 37.5mg, tramadol prn, lunesta 6 mg, actonel, tri-est (compounded estrogen) 7.5 mg 2xmultivitamin, calcium w vit D, fish oil, aspirin

New Member

Date Joined Oct 2007
Total Posts : 1
   Posted 10/3/2007 2:37 AM (GMT -6)   
PattyLatty, I noticed you take 6mg. lunesta/day. So do I. However, the doctor will not prescribe more than 3 mg., so a 30-day prescription lasts 15 days, and on other days either I dont sleep or sometimes the doctor will supplement by prescription with Lunesta samples. Are you prescribed 6mg. a day of Lunesta or are you in a situation like mine. Thanks

Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 10/3/2007 3:22 AM (GMT -6)   
Hi RL . . . welcome to the forum.

Most of us on this forum have either Lupus or a Lupus-like condition. Hopefully Patty will see your post and respond.

When you see medications listed in our signature, it just shows what that person was prescribed and is taking. It is not a recommendation to others. Question: I wonder why your doctor will only prescirbe 3 mg/day, but he will supplement that with samples?? Does he think you are taking the samples 3mg per day too? I'm sorry you are having such trouble sleeping . . . I certainly know how frustrating that is.

Anyway . . . welcome to the forum.


In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

Veteran Member

Date Joined Mar 2006
Total Posts : 2570
   Posted 10/3/2007 9:22 AM (GMT -6)   

Oops, I made a mistake in my profile and need to correct it. I take 3 mg of Lunesta, not 6. Sorry for the error. I also take 1200 mg of neurontin for restless leg and that, in combination with the lunesta helps me sleep. However, I still have a lot of trouble getting to sleep and I wake up several times at night. I have a C-Pap which I don't use but I believe that if I were to use it again it would help me sleep.

I had a sleep study done about a year ago and the sleep doctor prescribed both meds and the c-pap. I believe that the prednisone causes my sleep to be disrupted.

Have you discussed your problem in detail with your doctor?

By the way, welcome to the forum. Let us know more about you.

Lupus, Sjogren's, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, multivitamin, calcium w vit D, fish oil, aspirin

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