usually on fibro site but.....

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mscrowbar
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Date Joined Nov 2010
Total Posts : 877
   Posted 12/2/2010 10:26 AM (GMT -6)   
I usually post on the fibro site because that (so far) is the only concrete diagnosis I've gotten so far.
 
tomorrow I see a neurologist because my rheumy thinks that there may be more going on than just the fibro.
 
I think what is throwing him is that my blood levels go way off the charts whenever I have a "flare".
 
When I go to the neurologist I will already have the mri disk to take with me and also the blood work from the past couple tests. I am wondering what he may be looking for. I had thought maybe lupus but that is usually diagnosed by the rheumy, right??
 
I dont have the forms right here in front of me but by memory (or what memory I think I have) I can tell you that my iron was 6.2 (should be 11.5) and my vit d was 11 (should be at least 33) and several other cbc counts were in the "alert" status.
 
This seems to happen with every flare or because of every flare?? hmmm
 
Is this something that happens with lupus?? If so, why did the rheumy set me up with an appt to see the neuro?? Any ideas??
 
I should also mention that I had to have a blood transfusion in Aug. due to all the levels being out of whack??
 
I know I will (or should) get some answers tomorrow but I just cant stop thinking about it and wondering what it is the rheumy thinks is going on??
Denita
***************************************

Fibro, meniscus tears in both knees, arthritis in both knees, B-12 defficiency, pernicious anemia, vit. D defficiency, mild alergies, and insomnia.
***************************************

Way down south where the bananas grow a grasshopper stepped on an elephants toe,
The elephant said with tears in his eyes, " pick on someone your own size".

KristaM
Regular Member


Date Joined Sep 2010
Total Posts : 198
   Posted 12/3/2010 8:46 AM (GMT -6)   
Hi Denita...I'm normally on the fibro board as well, but am exploring lupus as a possibility, again.  I just wanted to comment, because like you, my blood levels are way off the chart as well!  My ana has shown to be negative though....I'm curious to know your levels.  Did they check your IgG, IgM and I forget the others...does anyone in your family have lupus?  My mother does, so I'm well familiar with the symptoms and we have alot of the same problems.
 
Good luck in finding out what is wrong!
 
Krista

J.P.
Regular Member


Date Joined Oct 2010
Total Posts : 86
   Posted 12/3/2010 10:47 AM (GMT -6)   
I'm usually on the lupus forum although I've only been diagnosed with fibromyalgia, but its my blood results that are throwing me off too. I have a malar rash most of the time but it is mostly mild. My ana is also negative. I have low platelets and low white blood cells... but I did find something interesting on the fibro forum that said sometimes with fibro there is a mild malar rash, I have never heard that before. Right now I'm trying to find a rheumy that sees fibro patients. My mom has fibro and i think she has lupus but she's afraid to get it diagnosed for insurance reasons, and she doesn't want me to either. It's really strange because our symptoms both began when I was four. I had the joint swelling, pain, couldn't move, and positive ana. I was hospitalized but doctors never figured out what was wrong and i got better. My mom started having symptoms shortly after, she was about 24 at the time, but she never fully recovered and is still having problems 28 years later. We wonder what we came in contact with that could have triggered whatever is going on with us. My sister also has fibro, but she is terrified of doctors and her whole life they have not believed her about her pain so she doesn't get any treatment. But I think they would believe her now since fibro is finally being taken serious.

KristaM
Regular Member


Date Joined Sep 2010
Total Posts : 198
   Posted 12/4/2010 8:58 AM (GMT -6)   
Wow J.P....that is really strange. And 4 is very young to develop this. I know in my case, it's hereditary. My grandmother had it, my mother has it and I have it.
But for you and your mom both to develop it at the same time...that sounds like something environmental. Did they check you guys for lyme? I wish you luck in finding out what the problem is. Take care!
Fibromyalgia, Chronic Pain, Fatigue, Rheumatoid Arthritis, Dizziness, Degenerative Disk Disease L4/5 and L5/S1, Pelvic Inflammatory Disease, Vitamin D deficiency

Lyrica 100 mg 3x daily, Hydromorphone, Vit D & Multi

J.P.
Regular Member


Date Joined Oct 2010
Total Posts : 86
   Posted 12/4/2010 11:58 AM (GMT -6)   
My mom and me were wondering the same thing.Could have been a coincidence. We must have caught a virus or something but whatever it was it triggered something in my mom cause like I said I got better and didn't know I was sick until a routine blood test when I was pregnant (I did have fatigue but there was no explanation for it so I just figured everyone felt that way or I was lazy). I don't remember much from when I was four so I'm just going by my mom's memories and her time line is a little fuzzy. She never told us when we were children what she was going through, I remember her sleeping a lot and I resented her for that but now I understand. She did her best and is a good mom.

KristaM
Regular Member


Date Joined Sep 2010
Total Posts : 198
   Posted 12/5/2010 9:59 AM (GMT -6)   
Very strange...maybe your mom had it all her life and it only really surfaced after she gave birth to you. What about her parents? Were they healthy?
Fibromyalgia, Chronic Pain, Fatigue, Rheumatoid Arthritis, Dizziness, Degenerative Disk Disease L4/5 and L5/S1, Pelvic Inflammatory Disease, Vitamin D deficiency

Lyrica 100 mg 3x daily, Hydromorphone, Vit D & Multi

J.P.
Regular Member


Date Joined Oct 2010
Total Posts : 86
   Posted 12/5/2010 7:12 PM (GMT -6)   
KristaM
My grandma has MS and her mom died very young, we don't know why maybe ovarian cancer ( we had trouble finding her real name because my grandma was only three when she died).

I asked about your blood test in a different post, they are way off the charts. Have you found anything out about that yet?

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 12/5/2010 8:54 PM (GMT -6)   
Oh, my....for a while there my lupus brain fog had me trying to figure out how your grandmother was a grandmother if she died at 3 !!
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

J.P.
Regular Member


Date Joined Oct 2010
Total Posts : 86
   Posted 12/5/2010 9:04 PM (GMT -6)   
Well, now that I've re-read it, I probably should have wrote that a little different... but I'm glad you were able to decipher it. just to clear it up-- my grandma's mother died when my grandma was three yrs old.

KristaM
Regular Member


Date Joined Sep 2010
Total Posts : 198
   Posted 12/5/2010 9:26 PM (GMT -6)   
I was just talking to my mom about this the other day...all these diseases seem to appear in the women in our family. My grandmother died at 65, she had lupus, diabetes, chronic back pain, RA. My mother has lupus and RA, her sister had MS and now my cousin has MS and I have fibro and RA. I wonder if there are some new diseases being formed by combinations of previous genes...just a thought...who knows!

I won't find out anything else until I go back to see the rheumatologist in 6 months! They will do repeat bloodwork then....I'm trying to find out what those numbers mean, but haven't found much yet! :(
Fibromyalgia, Chronic Pain, Fatigue, Rheumatoid Arthritis, Dizziness, Degenerative Disk Disease L4/5 and L5/S1, Pelvic Inflammatory Disease, Vitamin D deficiency

Lyrica 100 mg 3x daily, Hydromorphone, Vit D & Multi

mscrowbar
Veteran Member


Date Joined Nov 2010
Total Posts : 877
   Posted 12/7/2010 9:14 AM (GMT -6)   
I had my visit with the ent and the neuro this past friday.

1)I have a mass on my left thyroid. the biopsy is the 14th.

2) I get a slew of blood work done tomorrow morning to rule/rule out any connective tissue disorder??

3) after we get these two things settled we will work on iron levels and why they keep falling and the issue with my right eye.

so right now I still dont really know what I have or how and when I will get the results/treatment.
Denita
***************************************

Fibro, meniscus tears in both knees, arthritis in both knees, B-12 defficiency, pernicious anemia, vit. D defficiency, mild alergies, and insomnia.
***************************************

Way down south where the bananas grow a grasshopper stepped on an elephants toe,
The elephant said with tears in his eyes, " pick on someone your own size".
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