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Posted 9/11/2013 10:59 PM (GMT 0)
Well no MS proteins in spinal fluids which I'm glad for!
However, the following blood counts:
WBC was low 3.9
HGB was low
MCHC was low
Neut% was low
and neut# 1.9 was low
I guess this might account for the dizziness and not feeling good...will send a copy of this to my Rheumy doctor tomorrow...and Vitamin D was low again and I'm supplementing it 50,000 iu's twice a month???
and got to schedule a neck MRI and more bloodwork later as my veins are blown.
Then reserved for last a muscle biopsy...
Just tired of it all...and I lost weight over 5 lbs...
**Also, had high's on RDW MPV and Lymp% of bloodwork

Post Edited (Chartreux) : 9/11/2013 5:39:35 PM (GMT-6)

Posted 9/12/2013 12:02 AM (GMT 0)
They will have to keep a check on your white blood cells, it gets very dangerous if your neutrophils drop below 1. It means you have no resistance to disease or fighting disease. They should give you monthly bloods until they work out why they're so low. Do you have an infection somewhere?
I had a vitamin D injection when mine was ver low and this brought it up quickly as the supplements don't seem to be absorbed when you suffering from other stuff.
Sorry to hear you're struggling Char, best best wishes, golitho
Posted 9/12/2013 12:45 AM (GMT 0)
I'm sorry to read this Chartreux. At least they were able to find out the problem so they can treat it now. Did the doctor give you meds to get your blood count up or discuss what you need to do?

I hope you'll feel better Chartreux.

UA
Posted 9/12/2013 2:15 AM (GMT 0)
thanks for the report, still sound like you got a lot of issues brewing there, hope you get to feeling better.

david
Posted 9/12/2013 2:26 AM (GMT 0)
I'm sending Prayers and Positive Energy your way.Hang tough and feel better.

God Bless,
Rick
Posted 9/12/2013 3:29 AM (GMT 0)
Chart:

I'm so sorry to hear that you are still having so many issues. I'm glad that you don't have MS but they really need to figure out things for you.

Are you still on MTX? If so, it's quite possible that it's whats pulling your counts down. I know when they upped my MTX it affected mine. You really need to discuss this with your Rheumy. Your WBC is low and it can become very serious. Last week mine was 2.4, I'm not doing well either and am headed to the hospital in the morning for labs and chest x-ray.

I'm praying that they figure this out and really soon sweetie. I know you're tired of all this, we've known each other a long time and I'm truly sorry that you're going thru all of this. You know that I'll send as many prayers possible for you and loads of positive energy your way.

Hang in there, we're all here to support you. Let us know how you're doing.

Hugs,
Barbara
Posted 9/12/2013 5:44 AM (GMT 0)
Chart the low neutrophils can be a problem, about ten years ago I was diagnosed with low WBC's and high Lymphocytes  at first they told me I had mononucleosis but my counts never came back up to normal, so they did just about everything to find out what was going on, because my neutrophils would go down really low,  and border on  neutropenia, they even did a bone marrow biopsy and they never could find out what was causing it. Even to this day now and then I have problems with it???? Anyway when my neutrophils count gets low they tell me to avoid crowds and being around people. Usually when it happens I feel really run down and sure enough when they do a blood test the WBCs are low.  Hope they can find out what is causing yours to be out of whack!

I didn't think that the lumbar puncture was a definitive test for MS??? I know a high percentage of MS patients have a positive for their spinal fluid but not all of them do. Am I wrong about that? Did you have a positive MRI with spots?  I know there is certain criteria that has to be met to get the MS diagnosis, I mean I hope you don't have it, but allot of people go quite awhile before finally getting diagnosed with it. Just hope you are not one of them!

Hang in there Chart, I am wishing you all the best!!!Your in my prayers!

White Beard 

 

Posted 9/12/2013 9:01 AM (GMT 0)
So sorry Char and like WB I've known people who are battling the symptoms for years before they get a positive dx.

I certainly hope they get it figured out soon and looking at the labs I imagine you do feel like *#*# warmed over as they say in the hills!

Are they giving you any extra iron or vitamin supplement? I too would be really careful as to going where there are crowds, especially children, germy little creatures, and sick people, like the hospital! Lol really at least try to avoid exposure as much as possible, wear a mask even.

Prayers as always and keep us updated!
Posted 9/12/2013 1:18 PM (GMT 0)
Thinking of you Chart - best wishes and take good care of yourself.

Laura
Posted 9/12/2013 1:40 PM (GMT 0)
Thanks so very much it helps.
Yes, feel very warn down, sent a note into my rheumy with all the test results and might call my pcp if I do not hear back from my rheumy doctor..
I'm on Methotrexate so my rheumy will probably have me back off it, just have to wait and see...and I'm going to cancel further testing for now until next year, as all this stuff with the spinal tap has costed me well over $400.00 and we'll need money for Christmas and going to see our daughter graduate in December, so I need to get better....
Posted 9/15/2013 6:45 PM (GMT 0)
I now think the spinal tap was not definitive because I was on methotrexate and that can affect the results and the doctor said I'd have to be off methotrexate for 6 months and at this point I do not ever want to repeat this. She did say it's auto immune and so still no answers than before...
Also, waiting to hear back from RA Doctor to see what his take on all this is...
Last time I saw him he did mention the possiblilty of something rare in the auto immune area, because of the macular degeneration...
I did have an aunt die from something long named with poly neuropathy in it, but I could not spell it...also had myelo...my mom knows what it is but cannot spell it for me.
At this point I do not care anymore, it just get annoying that when I tell my pain management doctor I've been dropping things a bit more noticiable than before that they send me off for neuro's and then I get more undefinitive answers...who cares just, treat my pain...
big time frustrated...
Posted 9/15/2013 8:01 PM (GMT 0)
Oh Chart ((((((hugs)))))) I'm sorry you still don't have definitive answers. Get on your doctors to come up with what's going on with all the lows and highs in your blood work. That might, just might give them some answers somehow? I sure hope so. Take care my friend.

love and hugs
Loretta
Posted 9/15/2013 11:22 PM (GMT 0)
Chart (((hugs)));

It's so unfair that the Dr's can't get you a diagnosis. It's just not right that they aren't treating your pain completely. Sounds like they tease you and just leave you hanging. I'm truly sorry Chart.

Hang in there my friend you'll be in my prayers. I'll keep praying that the right doctor really soon. Maybe, you could try to contact NIH and see if there is anyone there. It's a great place, with loads of very smart people and they know their stuff. I'm currently in one of their research studies for infectious diseases.

Please let us know how you continue to do Chart. You're very important to all of us and we want to see you feeling better ASAP.

Hugs,
Barbara
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