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babs3169
07-18-2007, 11:27 AM
I got my blood work back.

Everything, my rheumatologist said, was within normal ranges.

and Therefore, I do not have Lupus or Sjogren's or any other autoimmune syndrome.

This makes no sense to me. How can I feel this bad and not be sick?

He said it "could be viral" and asked if I am feeling better. I said I am a little, that some of my symptoms are not what they were. I said, should I become symptomatic again, what should I do? He said to call him.

It's not that I WANT to have Lupus (and bless you all who deal with this every day) but I'd like to know what my problem is.. DOes that make sense?

To have three weeks of low grade fever, lethargy with some inability to sleep, very painful joint aches, legs feeling like I'm walking with boots full of water. Plus my medical history. I guess I am confused. I am thankful if I am disease free. But it doesn't make sense.

I really hope he's right.

I'm making an appointment w/ a neurologist for the burning on the bottom of my feet. But that's not til August 23... A very long time to continue waiting.

I know I probably sound like a whiner.. complainer.. and don't expect any of you to feel sympathetic.

I just wanted to thank you for your hospitality.. I wish you all the very best..

signed,
babs.. totally confuddled.

Saysusie
07-18-2007, 12:17 PM
Babs;
Just because you have not been diagnosed with Lupus doesn't mean that you have to leave us :cry:
We are still here for you if you just simply need to vent or if you want to share and help others.
I am happy that you are disease-free and I pray that it stays that way forever. I am sorry, however, that you do not feel well and I truly hope that someone is able to find an answer for your ailments and that they will do something to help you feel better.
Remember, you are still most welcome here!!

Peace and Blessings
Saysusie

babs3169
07-18-2007, 12:31 PM
thank you Saysusie...

I will visit from time to time.. I have a friend who has Lupus and though she does not live near me, I support her any way I can.

I guess I will be continuing my quest to find out what's wrong..

Thanks for everything!! You've all been so great!

babs3169
07-21-2007, 05:29 AM
This week's tests are for Lyme... and MS.

My PCP realizes there is something going on...

I now have pin and needles all over my body.. and I have NO reflex (rubber mallet test) in my right leg.... It's like it's dead.

In addition to the lethargic exhaustion.. and the aches... these are my newest developments.. :(

I'm hanging in ... and thanks so much for the support... I truly appreciate you !!

the_librarian
08-01-2007, 10:52 AM
For what it is worth, I had a flare that kept me in bed for a month in November of 2005. My husband had to stay home with me. I could not walk to the bathroom by myself or even sit at the table for a meal. It took me two hours to eat because I was too tired to make it through a bowl of soup without feeling like crying for the pain and exhaustion. I was undiagnosed. I was told that it seemed a lot like mono, but that I did not have positive results for that test. As a matter of fact, my GP tested everything he could think of and everything was normal. In September of 2006, my platelets dropped to 18K and everyone (doctors) freaked out. In January of this year I got my diagnosis. There is no way for them to say that my November 2005 episode was or was not SLE, but my GP thinks it likely. The blood tests really do fluctuate. I'm not telling you all of this so that you start thinking you have SLE again, but I am telling you that blood tests vary.

I'm glad to hear your PHP is working hard to figure out what is going on. If there is any support we can give you, don't hesitate to ask!

Missy
08-01-2007, 07:36 PM
Your feelings are totally natural! So many of us here felt like something was wrong for a long time before diagnosis. And there is something about being diagnosed, having validation that you aren't crazy, that fatigue wasn't being out of shape, etc. that really does make a difference, so my heart breaks for you - knowing that something is wrong and not being able to find out what is horrible.

You are in my thoughts. I wish you health, but even more than that, I wish you peace.

Saysusie
08-01-2007, 08:56 PM
Hi Babs;
I am so sorry that you are still not feeling well. What were the results of the Lyme and MS tests??
You are in my thoughts

Peace and Blessings
Saysusie

cheryl_v
08-02-2007, 10:55 AM
I'm sorry for what you are going through. I know the frustation of not knowing what it is thats happening to you. You don't want anything to be wrong, but it would be nice to have a name for it. I remember when I got a dx. It didn't really register that I was ill, I just wanted to tell everyone the name of it. I wanted to say it out loud, let them (and myself) know it was real and not in my head. I hope you get the answers your looking for. Let us know your test results please.

Thinking of you and all others here, all of you are in my prayers. :)

babs3169
08-03-2007, 04:37 PM
Hi..

Good news.. MS was negative ... The brain MRI came back clean.. The Lymes was negative..

and so now, I'm checking in w/ my confusion

My first ANA was 1:1280 with Centromere @40...

OK.. Now I am understanding that can indicate scleroderma...

Then my ANA screen done 10 days later as ordered by the rheumatologist was NEGATIVE...

This is some crazymaking!!

On Tuesday, I will have a third ANA done. and I'd like them to do it w/ the further definitive tests if it comes back positive again.

Seems totally fluked to me to have such a high ANA the first time...and 10 days later a negative.

My PCP thinks that one or the other is wrong, and wants to run them again... I am thinking that a negative may be wrong.. for how do you get a 1:1280 with centromere pattern wrongly? whereas a negative could be?? :changes: :D

So... I'm back in the waiting room..

Thanks so much for still checking in on me.. and caring... It means a great deal ..

Saysusie
08-04-2007, 07:03 AM
Are you taking medications? Many medicines can change the results of the ANA test. This includes nonprescription and prescription medicines that you may be taking.
I am glad to hear that your other tests were normal. I know this is becoming frustrating for you, especially when you can't seem to get clear cut, definitive answers! But, you are getting more good answers than bad :lol:
Hang in there, we are still here for you whenever you need us!

Peace and Blessings
Saysusie

babs3169
08-04-2007, 04:33 PM
Saysusie.. I've taken nothing but Aleve.. and sometimes a tylenol pm to sleep..

and prior to my first symptoms, I was taking nothing.

IloveHistory
08-05-2007, 01:59 PM
Hi Babs3169!

I'm SO sorry to hear that you aren't feeling well and that your doctors haven't been able to figure out what's wrong with you at the moment :cry:; I'm in the same situation with not knowing my diagnosis yet! :x

I'm very glad to hear that you don't have M.S. or Lyme Disease though! That does sound very strange with regard to your A.N.A. being so different! :? I definitely think that it would be a good idea to redo the A.N.A. Test! Let us know what your results are!

Feel better soon and God bless!

Saysusie
08-06-2007, 10:02 AM
No problem :lol: :lol: :D - it is very easily fixed!

Peace and Blessings
Saysusie

4sons
08-13-2007, 01:41 PM
Well, Babs ... I don't know if you're still around, but I feel the EXACT frustration you!!! Something is wrong here, but no diagnosis!