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momofltlbrat
Regular Member


Date Joined Apr 2007
Total Posts : 164
   Posted 2/27/2008 12:12 PM (GMT -6)   
Hi everyone,
 
Well, I saw the rheumy on Tuesday morning.  Had a two hour appt.  She got to see the rash, evaluated the pain I am in.  Looked at my nailbeds magnified x40 (don't know why, Ive never had that done), talked alot and listened alot.  She is looking at a wide spectrum of rare diseases, vasculities, lupus, and scleroderma.  Then came the tests.  Had a strep test, a urinalysis, and they took 18 vials of blood.  The office will keep me posted as things come in, and I see her again at the end of March.
 
I am confused, as to wheter now it is MS and an autoimmune disease, or just an autoimmune disease.  I ask, and the docs talk medical and I don't think I get an answer, but maybe they can't give me an answer until all the test come in.  Seems like this doc is being very through.  I guess I just wait and see.
 
This is all very frustrating as alot of you already know.  This is the third time I have "been diagnosed" and then it changes.  I am so physically tired, I drove bigbrat to school in my pjs and then went back to bed.  I hurt all over.  Going for a shower now.
 
Debbie

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 2/27/2008 1:46 PM (GMT -6)   
Hey Debbie

Hang in there friend! Get the rest u need...going back to bed when u can and want...and keep at this fight. It does seem as tho u've got a very good doc! She is doing a lot and looking at every possibility and that's just what u want! My docs look at my nail beds and all those weird little things too and it always makes me feel that they are carefully taking all this in and going to give it their all. I know it will be hard, but try to be patient and let them get these tests in. Yes, most likely u'll have to wait for the results..and best to if u can. I've learned the hard way that trying to 'guess' what's going on is only going to make it harder for u. I know u must be very frustrated with the on again off again dx, but just hold on a bit longer and let them get to this for u. Yes, it could be ms and another autoimmune OR just another autoimmune...but let them determine that and u give them all the feedback u can. Be sure to continue to keep up with what's going on with u and let her know as it happens. Take good care friend and lean on us here.


rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is like...um..well...night?*

Post Edited (rhondab) : 2/27/2008 2:06:17 PM (GMT-7)


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 2/27/2008 2:16 PM (GMT -6)   
momofltlbrat said...
Hi everyone,
 
Well, I saw the rheumy on Tuesday morning.  Had a two hour appt.  She got to see the rash, evaluated the pain I am in.  Looked at my nailbeds magnified x40 (don't know why, Ive never had that done), talked alot and listened alot.  She is looking at a wide spectrum of rare diseases, vasculities, lupus, and scleroderma.  Then came the tests.  Had a strep test, a urinalysis, and they took 18 vials of blood.  The office will keep me posted as things come in, and I see her again at the end of March.
 
I am confused, as to wheter now it is MS and an autoimmune disease, or just an autoimmune disease.  I ask, and the docs talk medical and I don't think I get an answer, but maybe they can't give me an answer until all the test come in.  Seems like this doc is being very through.  I guess I just wait and see.
 
This is all very frustrating as alot of you already know.  This is the third time I have "been diagnosed" and then it changes.  I am so physically tired, I drove bigbrat to school in my pjs and then went back to bed.  I hurt all over.  Going for a shower now.
 
Debbie
Seems like a pot of tea (or a beverage of your choice!) and a nap are in order!
 
A couple of thoughts, not necessarily in any order: MS is of course an autoimmune disease.  Very often folks with one autoimmune disease find they also have another. Or sometimes what a doctor thought was one autoimmune disease turns out to be a different one. They often have very similar symptoms.
 
Nail beds are surprisingly a very interesting diagnostic tool - -apparently a doctor can tell a lot from the nail bed!  So her close examination was an attempt to use whatever she saw there as one (or more) clue as to what is going on with you.
 
Sounds like she indeed is being very thorough. All that blood should help her narrow down possible diagnoses, and hopefully will come to some conclusions.
 
I hope you feel better after your nap!
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Sweetlydia66
Regular Member


Date Joined Mar 2007
Total Posts : 260
   Posted 2/27/2008 6:30 PM (GMT -6)   
Hey Debbie,
Just wanted to let you know i am thinking of you and that i hope they find out whats going on. I have total faith in Rheumatologists. I went to what seemed like a million docs over a course of about a year and a half. Then i stumbled on this Rheumatologist. I never, like you said, had a more thorough exam like that, ever. I was so impressed and he was so compassionate. He is the one who finally found out what was wrong. He did the nailbed thing with me too. He was looking at them and then like flicking them, and looking. Weird huh? He was probably like 65 years old too. I'm glad your in some god hands there. Relax, and do what you need to do to keep you well.
Love

Lynn
Dx Dec 06, Rebif, 44 mcgs 3 x wk, Baclofen, Cymbalta


Sunnycitrus
Regular Member


Date Joined Apr 2007
Total Posts : 334
   Posted 2/28/2008 8:47 PM (GMT -6)   

Hi Debbie,

 

I hope you’re feeling much better today! I’ve had a shorter run at all this stuff than you, but I do know all the dxing and undxing takes quite a toll…you just hang in there a little while longer, and let us know how you’re doing, okay? Your rheumy does sound really thorough, so hopefully this new round of tests will lead to some conclusive info and treatment.

 

Sunny


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 2/29/2008 8:22 AM (GMT -6)   

Hey Deb,

I am jumping on here late but I have been reading these posts.  I just wanted to offer my support.  I hope you get some answers and relief real soon.  This Doctor sounds very thorough.  Hang in there and let us know what the outcome is.

Love and prayers,


Gretchen       co-moderator MS board       diagnosed with MS July 2006


momofltlbrat
Regular Member


Date Joined Apr 2007
Total Posts : 164
   Posted 2/29/2008 11:15 AM (GMT -6)   

Hi everyone,

Thanks for all your support.  My Rheumy called yesterday with a few results.  I have red blood cells in the urine so they may do an abdominal ultrasound to look at the kidneys and bladder, my B12 is very low, (which it has been), and my CPK is 15 should be less than 5 - that is the test for inflammation.  I sure didn't need the test to tell them that HAHA.  Waiting for more test results.  Accepting the "undiagnosis" a little better now, I realized noone said I don't have MS, or I have MS and Lupus, so I have to try to find my patience, at least until the end of March when I see the Rheumny again.

Thanks all for being here with love and support.

Debbie


Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 2/29/2008 10:34 PM (GMT -6)   
Debbie.


wow, ive been through alot of that. Wonderful news is i had all those blood tests done and asked at lab and were told they all come back within 5 -7 days so just as she informed you of your b12, i dont think you'll have to wait so long for the other results either.

Ive also had 2 Rheumy's , one told me "if you dont have swollen joints you do not have RA , nor Lupus..its a given." I'm not sure thats accurate depending upon if your flared at the time. I would of also thought I would have tested inflammed even if from the ms. I wasnt though. My sed rate has consistently been low. I got more records today that also reaffirm for the 4rth time that my Ana is ok, Anca, Sed Rate, Ra Factor etc.

I am also low on B12, dont be surprised is folic acid isn't mentioned with that. Sometimes they go hand in hand. The first time they put me on folic they really didn't explain it to me, i surely wish they had of. It's a needed  mineral /viatmin type of thing in your body that keeps bloodclots from forming around the heart...now that i know that , i take it daily as directed without skipping at all. I do wish they'd tell things when they are that imprortant. B12 shots and folic sometimes are handled together and not uncommon in Ms either. Or in most Chronic diseases either!

I've had them really look at the hands . Both did, you probably did too. They move the skin on outter hand back and forth looking for knots on tendons, i didn't know that at the time. I do now.

The Kidney thing , I also share with you. Since you had some hematuria in your urine they wouldve also checked for prtoein, and dosen't sound like you had that (good news), the ultrasounds of the Kidneys are for a couple of reasons. One for the Kindeys---when a kidney disease is needing to be ruled out, the size of both kidneys will shrink if there has been active disease (without symptoms which is common). Also they will be looking for cysts in both your kidney's and bladder. Among many things that I'm sure I'm not aware of. I did have the ultrasound on both and the one for the bladder looked for cysts but also for residual urine to see if urodynamics was needed to test for neurogenic bladder from MS.
These are just some tidbits I learned along the way. Please dont think this is in entirety. The fact that you had inflammatin will help her to decide upon a course of treatment for that. Which im sure will provied you with alot of relief of pain. I'm sorry your having it so badly!
Also a person can be anemic (sounds as if you are) and can cause symptoms a patient has no idea of. You might would like to google that to see what symptoms might be relieved once they (if they do) begin B12 injections.

It does sound like you have a thorough doctor and I dont think your Rheumy is like the one I got for sure! Sounds like you will be getting some help for symptoms for sure and alot of answers. Alot of the ruling out sure eases the mind too!

Keep us posted and I'm glad your being checked. Since it really doesn't take as long as the window she gave you (they do give a longer window just in case), I really do feel you'll be getting results of some things sooner than you may think.

I'm so glad for you. I do know how it feels to suffer without any physician offering hope of relief and then I've also thank God, had the blessing of having one like yours, who wanted to help what I suffer with.


We are here for ya yeah
thanks

kiera


Every day brings us closer to what we reach for .........in all things.
 
Kiera

Post Edited (Kiera) : 2/29/2008 9:39:42 PM (GMT-7)


momofltlbrat
Regular Member


Date Joined Apr 2007
Total Posts : 164
   Posted 3/2/2008 6:08 PM (GMT -6)   

Well, here is the latest.  The Rheumy called Friday afternoon to say the Panka(sp) test that test for antinetrophils is elevated, and that along with the other results has her suspecting a type of vasculitis that effects kidney, bladder and lungs.  So now she is sending me to a nephrologist.  I of course looked this up and found the treatment to be steriods and chemo drugs.  Called my mom for comfort and got the same old story.  She wants me to move my 2 girls and me to NC where she is.  She knows I don't want to do this.  So now, I wait for the appt.

Debbie


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 3/2/2008 7:53 PM (GMT -6)   
Hey Debbie

Wow...getting close to some solid answers. I know the reality of what's really going on can be scary, but once u know u can begin to fight directly at the source. Hang on tight friend and get there! Don't let stresses, like u'r mom's requests that u move, get to u. Take good care of u and ur' kiddos friend. Please let us know when u know more. Thanks for this update!
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is like...um..well...night?*


Sweetlydia66
Regular Member


Date Joined Mar 2007
Total Posts : 260
   Posted 3/2/2008 8:59 PM (GMT -6)   
Hey Deb,
Just want to offer my support to you. It looks as tho maybe your getting closer to some answers. Your in my thoughts and prayers.
Love
Lynn
Dx Dec 06, Rebif, 44 mcgs 3 x wk, Baclofen, Cymbalta


Sunnycitrus
Regular Member


Date Joined Apr 2007
Total Posts : 334
   Posted 3/3/2008 4:36 PM (GMT -6)   

Hi Debbie,

 

I’m so sorry you are going through this. I really hope the new appt leads you to the correct dx and proper treatment. We are all here to support you. When do you see the nephrologist?

 

Sunny

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