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Ginny? Can u please help me?

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Posted 1/3/2008 12:02 PM (GMT 0)
Since my Rheumy sad i do not have Ms, connective tissue disease or Sle, but says my renal biopsy had something that stood up to him. Problems in eyes, dry mouth, spasticity......he suspects what he says is Immune deficiency syndrome (not acquired).

On his lab work my neuro told me that he gave away what he's looking for...

It was circulatory immune complex (when i reseach this i find sjogrens, weggeners, polynodsa (sp) and many more. Some of which you have yourself.) I'm referring to the vasculitis here.

He put on the script for the  blood work to be done these following labs:

Circulatory immune complex, Ana, Anca, total complement 3, 4, ESR (sed rate), c-reative protein. (Ra has also been ruled out).

My question to you? Do any of your conditions such as vasculitis cause you chest pain? I have chest pain and it scares me, but Ive tested as having a healthy heart, but then put in icu cardiac unit , but only to be released with them saying GERD, abormal ekg but normal echo ( i dont think they knew what was wrong).

Can you please tell me if you have chest pain and if you know which one of your illnesses it stems from. Chest pain can be muscleskeletal/ pleural/ pulmonary/ anxiety/ vasculitis/embolism and tons of more of things. I'm curious if you have it and if they've told you which of your disorders it comes from.

Thank you in advance! I will be praying for you in just a moment, when i lay back down for  a bit...so i wanted you to know that your being prayed for today:)

kiera

Posted 1/3/2008 2:36 PM (GMT 0)
Hello Kiera,

 

It's really difficult having all these symptoms and not getting clear answers isn't it.  I'm sorry you have to go through all this.  It reminds me of the decade that it took for my doctors and specialists to finally "clue in". 

 

The blood work you are having done is very common when looking at lupus actually.  Although, I'm sure it is standard for any autoimmune diesease. 

 

My vasculitis doesn't give me chest pain.  I do have heart issues, but again, those don't give me chest pain either.  The vasculitis, which is inflammation of the blood vessels, really only gives me headaches, and issues concerning proper blood flow.  My vasculitis is fairly mild (right now, and has been for a few years)

 

I do have a link here that might help you.  This condition, called Costochondritis, is fairly common in those of us with lupus, and fibromyalgia.  However it can appear in people who don't have either.  It can make you feel like you're having a heart attack.  It's pretty scary for those who have yet to be diagnosed, but keep having these problems.  If your blood work comes back fine, you might want to suggest this disorder to your doctor and see what he thinks.

 

Thank you for your prayers Kiera.  I'm praying for you right now too!

 

God bless,

Ginny

 

Here's the link...http://www.emedicinehealth.com/costochondritis/article_em.htm

 

Posted 1/3/2008 7:39 PM (GMT 0)
Sorry to hear that you have lupus. It is a horrible desease. I know well about lupus as my sister in-law was diagnosed with Lupus at age 22 and its a really bad desease. I hope you don't have it as bad as her b/c she has the worse. only 1 person out 10,000 people get it so bad.

You should take care of yoursef. do exercise, take your medication timely. that's the only thing.

Good luck
Posted 1/4/2008 11:18 AM (GMT 0)
Thanks Ginny,

I did ask the doctor if he were looking for lupus (sle) he said no. I do understand there are diff types but he still seemed to not be searching for that.
It was one of the rule outs when i first was dx'd with MS, however you never know what's going on. Theyve yet to explain why during 2 diff episodes i had a facial cyst form that had to be removed and have had 3 facial rashes but they covered the face, ears and upper chest, not the butterfly type.

I do have the dx of chostachondritis. I just wonder if its a correct one as that right bone in the sternum popus up and i do know there is a main artery there as well.


Thanks for the prayers and despinos I'm sorry about your sister in law. Most of these disease/ disorders are horrible.
Autoimmune things seem to bring friends (other disorders).


Hope you all have a great rest of the day!

thanks

kiera
p.s. Ginny, i will get some liquid motrin as this is suppposed to help chostrachondritis and next time this occurs I'll possibly be able to rule this in. It would be a relief if that is the problem!
Posted 1/4/2008 4:31 PM (GMT 0)
Hi Kiera,

 

I think that if you have the costochodritis dx, then you should be confident that the pain you're experiencing is exactly that.  I'm sure you've had heart tests like EKS's, etc?  That would rule out any heart involvement.  It sure is a mystery what you have isn't it.... Just keep this in mind....Even though your doctor isn't looking at lupus, he might later.  Do you have at least 4 of the 11 criteria for a lupus diagnosis?  You can find them here...http://www.lupus.org/webmodules/webarticlesnet/templates/?a=75&z=9

 

Lupus is "the great immitator".  I pray you don't have it.  It's one of the most devestating diseases out there.  I wish more people knew about it and its effects on a person's life.  Not enough research being done for it.....

 

I'll continue praying for you Kiera.  There are lots of ladies in the Fibromyalgia forum who have costochondritis if you want to more about it!

 

All the best,

Ginny

Posted 1/4/2008 7:58 PM (GMT 0)
Well that's where I get confused. Twice i was put in for what they thought was cardiac but gave me the dx of chost. Keep in mind that i had an "abnormal ekg, but normal echo", i have no clue of why or what this means. I was told that sometimes with disease , ekg's will change over the years mildly and sometimes for no reason at all. Ive had exrays of the heart and passed a stress test 3 yrs ago (ill probably repeat that last one).

Yes, its a mystery. The larger hospitals don't think so. They say MS. Ms is a great immitator also. Therein lies the problem with all of the limbo for many.

Hon? I fit the criteria for every symptom of fibro and every symptom of MS, and more than 4 of lupus. Keep in mind that the crossover symptoms are great numbers.

Now, a good question that might help crack a bit of this puzzle on our own is, Lupus does not have spasticity? Correct? If it does not (and im going to look at your link, ive studied other lupus sites before too)...if it does not then this is def something that has spasticity. It is episodic as Ive gotten 65 good days of feeling normal.
Other times its been 30, 22, etc. before it slams me again.

I do agree with you about its devestation. I have a g/f at my church with it. To be honest I siimply don't wish to downplay the other diseases as they can be of a severity that is unreal also. They usually don't carry that prognosis but again, they can.
Lupus is very very sad. My friend was dx'd with MS for 1yr before finding out she had Lupus. She also thinks I have it. One reason is the blood and protein in the urine-always. Thats been there for 10yrs though and i was told it was think membrane of my kidneys due to prior infection.

The part that gets me is he said no when I asked about it. To be quite frank , ive suspected it all along. For one reason, yes i have all those symptoms of ms that mimmick lupus and vice versa but then there is skin involvement at times!

Oh, and lets not forget that it is possible to have both (his friend he was training reminded me of this).

I have a place in my head that they say was either a mild tia or head injury. It is in the white matter though.

I guess Ginny I'm simply repeating what you did, LOL, that its a mystery! I struggle daily and find even my first few good days (out of episode) to be hard as the memory of what i've just came through is still very fresh. Lots of pain and lots of sensatons for sure.

Thank you Ginny for your prayers, they are def. needed and I will be praying for you. Everytime I speak or see Rhonda (friend from church with lupus) ill let it remind me of you and i'll pray ok? I know your sooo young to have all of these things. I'm totally thrilled that you have faith though!!!!!!!!

This particular doctor really is my friends doctor for her lupus and he's the one who pulled the old renal biopsy so i do know that he's looking for it or lets say looking to rule it out. A bit of both. He made a comment when I asked about Sle, he grinned and said no, but there are a few rare ones that are immune deficient that i believe you have one of. (so helpful huh?)

I take b6, magnesium, calcium , and on copaxone at the moment , until they finish sorting this out.

I pray that I dont have both. I surely do not want lupus , but Id not know what to do if I had both!

Thanks for your reply!

and ginny? Your so right that it needs more exposure/awareness and funding!!!!! If it were to be brought to the light as much as breast cancer and ms there might be many more breakthru's!

kiera

Posted 1/4/2008 8:13 PM (GMT 0)
I'm back.

I just read the link that you gave me. I do not have raised red patches, nor the butterfly rash. Sunlight does not increase any skin changes (only severe heat sensitivity ,meaning it brings pain the longer im hot, like with MS).
I do not have oral ulcers but i do have an extremely dry mouth upon waking up. To the point that i have to first rinse mouth and clear in before I can brush my teeth.

They aren't very specific about the neurological symptoms on this site, but yes i have many of the type.

I have had at least one bout of Optical Neuritis. This Rheumy doesn't think its ON though. Although 5 other doctors do.

The renal-yes

hema-no

Ana-tested negative in the beginning (first episode), thats why these labs that are out now, will be a tale tale sign I think.

The immunologic, I've never had any false positives nor been told I was positive for any of those.

Arthritis -yes and in neck/elbows/knee swells but no damage when exrayed.

Ginny, lupus had no dystonia or spasticity does it? Therefore, id either not have it, or id have both it and one other:(

Labs will be back soon and maybe tomorrow!

I'll keep you updated, and if you don't mind, I'd love to try and support you guys on this site as well? I suffer from the fatigue/renal involvement and a few others that have a common thread.

My friend and I at church really understand each other when describing what we go through.

Thanks again for posting back

kiera

p.s. as far as the spasticity no. I mean sure i get the jumps but thats the very mild version My legs turn inward, they become where i cannot walk. It has spread to my arms and even my throat muscles at times. Which they did say at the hospital happens, the voice gets hoarser and lower as a result. It severe spasticity attacks, thankfully they do not stay and baflofen clears them up. that is why i wonder if dont have 2 coexisting things. They also suggested i did.

Posted 1/7/2008 3:58 AM (GMT 0)
Positive for anemia
Posted 1/7/2008 5:10 AM (GMT 0)
Hi Kiera,

 

Sorry it took me a few days to get back to you.  Okay.  You don't have MS.  That is a for sure right?  An MRI would rule that out right away.  The lesions that MS causes are extremely distinct.  Can't mistake them for lupus or anything else.  So that's good.

 

Now, the anemia..... I'm sorry to tell you this, but anemia is VERY common in lupus.  It's one of the most common symptoms.  I had chronic anemia when I was diagnosed.  I was so anemic that everything I ate went right through me (gross, sorry).  I was losing weight and looked anorexic.  It was brutal.  I was extremely tired and fatigued.  As soon as I was diagnosed, the prednisone kicked in and the anemia went away.  I get a slough of blood work done every month to monitor my hemoglobin levels and all the other crap that I deal with, lol.

 

Also, many people are now being diagnosed with lupus without having a positive ANA.  The reason is that your ANA fluctuates rather quickly.  So you can go from positive to negative and back to positive again in just a few weeks or months.  So don't rely on that test for a diagnosis. 

 

The dystonia and spasticity you experience, can be a symptom of lupus.  I've heard of it happening.  Every now and then, I'll all of a sudden have an arm or a leg go flying out to one side, or I'll just be sitting here at the computer and my whole body does a "jump" of sorts!  It's weird!  I wonder if it's the same as what you're describing..... Hmmmm. 

 

Lupus can manifest itself over a very long period of time.  Giving small symptoms and then getting more and more aggressive as the years go by.  When I track back to when I started having "issues", I was 13.  It wasn't until I was 26 until I had enough symptoms and weird stuff going on to get a diagnosis.  this "could" take a while.  Or, it might happen quickly.  Just too hard to say.

 

Keep a daily diary of your symptoms, your sleep patterns, menstrual period, appetite.  Pretty much everything.  It will help you keep track of what is going on, and when you see your doctor, you'll have loads of information to pass on.  This disease is as frustrating for the doctors as it is for us.  We all need to work together!  Do you have more labs coming back?

 

Have a good start to your week Kiera.  Don't hesitate to come over to the lupus forum if you like, okay!

 

Ginny

 

 

Posted 1/7/2008 5:29 AM (GMT 0)
yes, the cic, the complements 3, and 4 the ana, and the ANCA along with homocistiene and c reative protien and a host of others.

MS was dx'd twice. No lesions but they put me in the group of 15% without lesions. Opical nuritis and neurogenic badder with temors/unsteady gaiit were their objective finding.

Howver, like you said, it is a mystery. Anemai is def there, along with the blood n protien in the urine.

Ill have answers tomorrow on my results or at least a phone call trying to get the doc to call me back with them.

I'll let you know then , ok?

thanks for helping me through this.

I did look up chostachondritis andbought liquid motrin to see if it helps..thanks tons


kiera
Posted 1/7/2008 4:19 PM (GMT 0)
Good morning Kiera,

 

Well, unsteady gait and tremors are symptoms of lupus too!  I have a very unsteady gait sometimes.  Makes me feel kind of dizzy or off balance.  The tremors are almost always just in my hands.  I don't have either symptom all the time.  They come and go as they please!

 

I'll be interested to know the results of your other labs.  I hope the motrin helps with the costochondritis. 

 

Have a good start to your week Kiera.  Still praying for ya!

 

Ginny

Posted 1/8/2008 6:37 PM (GMT 0)
Labs came back. Neuro's office is referring me back to general doctor as these labs fit her realm they said. They wouldn't tell me all of them but did say they would give me a few examples (that a few came back abnormal).

B12 was too high, which Id been getting B12 shots so that's ok, they obviously worked, as she said.

Im vit D deficient-larger hospital told me that most MS persons are and it can decrease some of the symptoms so they had put it on their labs and sure enough , I am.

Ana was negative- she said this is what they usually check for Lupus (I recall you telling me its negative sometimes even if you have lupus)..is there any definitive way to know if you have lupus? From what I gather, theres no test , but rather if you have all else ruled out and fit 4 or more of the symptoms?

She would not tell me what the ANCA, and Creactive protein was, said your family doc can go over all of the rest with you.

She didn't sound alarmed when I expressed concern. I said , that doesn't sound good, she said no, no, its just that these are handled more by primary care.

The doctor (Rheumy) told me he didn't suspect SLE, but that there was a group of rare immune deficiency syndromes and he thought I had one. I think the circulating immune complex test, with Anca, complements 3, 4, ESR and C reactive protein will be what tells if he is onto something or not.

Thankfully my appointment is tomorrow.

My spasticity is very pronounced and if you've ever had children and have had braxton hicks, my tummy had like 5 sets of balls during a spastic attack that clump up painlessly. Even my neck muscles are affected and I have to use my arms to help my leg become straight if its been bent (rigidity).

I will try this motrin tonight. I will also ask my general doctor for a stress test as Ive had the ultrasound that shows all valves are ok. I'll also ask her what an abnormal ekg with normal echo means?

Ill update tomorrow
Thanks for all of your prayers Ginny. I do care that Lupus hasn't gotten the light shone on it, that it deserves. Suffering daily is something that shouldn't be done in private. It's something the world needs to be aware of and on top of to try and find a way of resolving it.

I am not leaving it all at this, im sending for my own renal biopsy to have, so that when I have to go to another Rheumy for osteo of my knee, I can let him take a look/see. Also I do have to go back to the bigger hospital anyway for followup, so I'll also take it to them.

Many Prayers,

kiera
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