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Posted 7/17/2009 2:02 PM (GMT 0)

redface  I have not been diagnosed yet have lumbar puncture on Wednesday july 22nd. I have had symptoms of something for 12 years and my family Doc thinks it is SLE. I am now having problems with cracked corners of my mouth I can not get rid of, had it for a month. Doc has given me Trimicilone or something like that. I am developing yeast infections under my breasts and groin area and I am clean person just don't understand why I keep getting these things. I have vasculitis, been diagnosed with Rheumatoid arthritis, Osteo arthritis, Peripheral Neuropathy and I get pain in both eyes sensitive to light. I am tired, have not been able to work since Janurary 9th 2009 and was turned down by dissability, but have a lawyer to appeal the darn thing. Does anyone out there feel same things? I have developed muscle twitching and it drives me nuts, I have recently had urinary retention at night I need to go but can't, I am ok durring the day just problems in evening. I have trouble with my bowels not able to go. I have lost sensory I drop things and get burns from oven don't notice till later. I have trouble with remembering things and my son is upset because he said I am not the mom he use to know and he is not able to talk to me like he use to, He said I can not think like I use to.

  I get chills in evening usually don't last long.  Sorry I keep rambling on. I am going to stop. Does anyone out there feel some of the symptoms I mentioned?

Thanks for listening.

Posted 7/17/2009 2:55 PM (GMT 0)
Hi hon, I'm Carol. Well you came to the right place. You have friends here who in a very short time will be as close if not closer then your own family. Particularly when you need someone that understands what you are going through.

While I don't think any of us will have all the exact same symptoms we all know what it's like to feel out there all alone. Especially when "but you don't look sick" comes up. I have the cracks on the corners of my mouth. Many of us do. For me what works the best is 99 cent carmex that I slap on thick at bedtime for a couple of nights and it's gone. It comes back from time to time but I do the carmex and it works. Others have perscriptions from dr. that works for them. I take lasix to help me pee. I can drink gallons of liquids and nothing happens. My dr. said to try (sounds silly) to move up and back and side to side to em pty your bladder. It does help some but I still need the lasix. chills Yep! tired you betcha! Short term memory loss? confused What was the question? Most people have trouble getting the SSD right off the bat. I'm glad you have a lawyer.

As for your son. I don't know how old he is. Mine is 29. (wow) now I feel old. I hope someone comes on here and gives you the link to what we call the spoon theory. Everyone who has a loved one the suffers from any type of chronic illness should read this. If your son isn't old enough to understand perhaps someone else in your life can help them understand that mom is still mom but she is not always feeling good.

I'm so sorry you are going through this. I'm always filled with mixed emotions when someone new comes here. I'm so happy they found us but so sad they are yet another person who has been struck by this awful disease.

Hang in there you will have many others comes to say hello and be of help and support. Keep coming back asking questions reading posts. Knowledge is power

Hugs

carol

Posted 7/17/2009 3:19 PM (GMT 0)
Thank you Carol. I do feel ill from time to time where I can't even get out of bed. They have me on Cymbalta,percocet, and Nuroton for pain. I take Meloxicam for inflammation which i don't think it helps. I told my neurologist on monday that my Doc thinks I have Systemic Lupus and I have been to two Rheumatologists who do blood work and can not diagnose my illness. My Neurologist ask me if any of the Doctors I have seen did a Lumbar Puncture, I replied NO. I have had an MRI comes back ok, but no LP. He said that MRI and Lumbar puncture (LP) go hand in hand in diagnosing diseases. So he is doing LP wednesday. I have read and read all kinds of internet material on MS and Lupus and I believe I have Lupus. I don't want it, but I feel if I can get medication to help symptoms that I would possibly feel a little better. My son is 18 and ADHD he is on medication, but struggles with things from time to time. His father has not been to much of a Dad and my husband now can be cold hearted does not know how to relate to people always negative. I am in no condition to get away from him been sick for past 10 years off and on In 2004 I had a spell where I could not walk was sick for 6 months. I just tell my son I love him and need him. Ignore bad comments and think good of himself he is a good person. I am going on and on again well Thanks for everything and hope to hear from others with more advice. Take care Djcks
Posted 7/18/2009 12:56 AM (GMT 0)
Hello Djks,

 

Welcome to the forum. I'm sorry you're in a limbo with your diagnosis.  It can take some time to sort all the symptoms and blood tests out.  Keep a diary of everything and hound your doctors if you need to.  You have to be very proactive with autoimmune diseases.

 

Your symptoms do sound like Lupus, but could also fall into the RA, Fibromyalgia, Chrons, Irritable bowel side of things too.  It could be that you have more than one disease happening. That is very common with AI diseases.  Pop into the Fibromyalgia forum too and see if you can relate to what we talk about there. A lot of your symptoms are what I experience with Lupus and Fibromyalgia.  The factthat you have been diagnosed with RA is a very important first step.  Let us know how your LP goes, okay?

Most importantly, make sure you like your doctors and that they are advocates for your well being.  If they're stupid or insensitive drop them like a hot potato and find new ones.  Don't waste precious time on a moron!

 

Blessings,

Ginny

 

 

Posted 7/18/2009 12:40 PM (GMT 0)
Thank you Ginny They have ruled out all of the things you mentioned except the RA ,but they said I do not have the red swollen joints like in RA, but my one Rhuemy said you can test positive for RA but not have it. They are all thinking it is LUPUS. I am seeing a Rhuematologist in Indianapolis on August 31st. My Nuerologist is in Indianapolis,IN. He is the Assistant Professor in Nuerology at Indiana University. He believes it is lupus.
I appreciate all help and talking with others. My regular Doctor thinks I may have Fibermyalgia too. I know I can not get messages because its very painfull. When my cat walks on my legs it feels like a ton of bricks very sensitive. I had trouble sleeping again last night which is normal, very frustrated that I had to pee real bad and couldn't get it going. I will talk to Doctor soon about that. I am scared a little about my Lumbar Puncture because I had spinal block for knee surgery in 1992 and I leaked spinal fluid and suffered 2 days until they did Emergency blood patch. I do not want to go through that again. I will check out other illness posts and see if I can relate. You take care and thanks for your help.
Djcks
Deb
Posted 7/18/2009 1:53 PM (GMT 0)
Deb,

I'm glad you found this forum because your complaints sound familiar and I know many folks here will be able to relate to what's going on with you. Fibromyalgia and RA have symptoms that nearly mirror those of lupus. What did you say you're taking for your RA? I don't have RA but I know it can zap you of your energy, as can fibro.

I'm sorry you're going through such a rough time and I hope you get some information from the lumbar puncture. Hang in there in stick around.

Pat

P.S. I'm a graduate of Indiana U at Bloomington. One of my favorite places in the world.
Posted 7/18/2009 7:45 PM (GMT 0)
 Pat, Thank you for your welcome. I have already felt a little better just knowing there are others I can talk to that understand my everyday struggles. I am not getting anything for my RA because even though I test positive since 2004 and it is now testing at higher level since, my Rhuemy does not think its RA. My Nuerologist is given me Cymbalta,Nuroton, and Percocet for pain. I also take Meloxicam for inflammation. I still have inflammation and in the mornings I can't even touch finger to finger, I have a walker with 4 wheels because some mornings I can not stand on my own two feet due to swelling. I hope they find something in my LP test on Wednesday, I have read alot of posts where people didn't learn anything from the LP it was normal. I have suffered long enough and its time to get me some medication to treat which ever I have so I can try to enjoy some life.  I never thought at 42 that I would have a walker and a electric bed . I have not been able to sleep in a regular bed for 4 or so years I suffer to much pain within half hour. I use to sleep in overstuffed recliner until my bottom started getting painful and wake me up. so my husband set me up an electric hospital bed with foam cushion on it. I do get more rest now. Today I felt somewhat okay in the morning by noon I was exhausted I just feel wierd. My son's Graduation open house is tomorrow and I hope I am not getting one of those days where I feel like a flu bug has invaded my body and I can't even get out of bed.  I will talk to you all later. Wish you all a good days ahead.

Djcks

Deb

Posted 7/18/2009 9:04 PM (GMT 0)
I just wanted to say welcome. I'm glad you found this forum, what a treasure and a blessing it has been to me. I'm sure you'll feel the same if you hang around. Love ya, Judy
Posted 7/19/2009 9:25 PM (GMT 0)
Djcks,
MY sis lives in Indy, well westfield, and is an RN. I think the docs where you are going are good. I had many of the same problems you describe. One thing that was wrong with me was my thyroid, and it took forever for them to really properly diagnose and treat it. The range for the TSH has been changed by the board of endocrinology to lower than six or five or whatever it was, but most thyroid tests have not gone through FDA approval to be used at the lower range. So the labs legally must keep the old range where 5 or 6 is high normal, even though I think they lowered it to like 3 now, you can find out at the Board's web site.

When my thyroid was treated, much of my neuropathy went away and my abnormal fatigue. If you can't see a good endocrinologist, and they can be very hard to find, I would try an ob/gyn who does bioidentical hormones and wellness. They can test your vitamins (sores, infections) and hormones. When you are chronically ill, you can have problems getting the vitamins out of the foods you eat and using them right. Only testing can tell which you need and which are too high.

My son used that triamcinalone for a bout of "apthous ulcers" he got all in his mouth. But he also took miracle mouthwash, which is what I use.

You might want to google Reiters syndrome or Behcets. They are looking at those things with my mom due to the persistence of her mouth sores, but she doesn't get the skin rash. Have you been to a dermatologist for the skin rash/yeast infection? They are often really really helpful, since the skin is an organ. And they don't get many really sick customers, so they often really work really hard.

Marji
Posted 7/20/2009 12:41 PM (GMT 0)
Marji,

  Thank you, I have seen two dermatologists one in chicago and one in my town and had biopsy they come up with vasculitis, which is common is some autoimmune diseases. I guess we just have to figure out what>.

  I will look up those other things and read on them. Thanks again everyone for helping me feel better.

Djcks

Deb

Posted 7/20/2009 12:45 PM (GMT 0)
Judy,
Thank you for welcoming me to the forum. I have already been made to feel welcome by quite a few and you too.
I will let you all know if I find something out next wednesday. Take care.
Djcks
Deb
Posted 7/20/2009 9:51 PM (GMT 0)
WOW.. you have many of the things I have... chills, eyes, .. yeast...( but I didn't know that was Lupus related).osteo...turned down for disability...
Do you have joint pain? or did I miss that...
all the best to you...I hope your son's open house was a good time for you.......
Posted 7/24/2009 2:06 PM (GMT 0)
Weleetka,

   I have joint pain mostly in my fingers and knees sometimes hips. I have real bad shakes today so excuse me if i miss spell. I am waiting for my results of my lumbar puncture. I should know in few days. I was turned down for disability but I have lawyer now and they said I have a good case and they are helping me. My son's open house was good, but I was very tired on monday just can't get energy. I don't know if I have Lupus or MS ,but I will find out soon. I am having trouble with bladder retention at night now. very frustrating waiting games and finding right doctor to help is frustrating also, but I am going to Indianapolis now and i believe they will get to bottom of this. I will keep all posted on what I find out.

Djcks

Deb

Posted 7/25/2009 5:03 AM (GMT 0)
I'm glad your son's party was good... I know functions take a lot of energy and when I am involved in things... at church or other places... I usually go down right after....
I have the joint pain too... every joint... but my knees, thumbs and the tops of my feet... oh my that is so painful when it gets in my feet... and toes.... I hope you get some relief...
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