my low platelet drama continues.....

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Ginny
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Date Joined Feb 2003
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   Posted 7/17/2009 8:30 PM (GMT -7)   
I got my blood checked last Monday and was very sure it would come back with my numbers reaching the normal ranges.  BUT, I was doomed.  My numbers went back down.  So the Neurontin isn't the cause of my low platelets.  I'm crushed. sad
 
I have an appointment with my hemotologist on August 13.  I know he's going to want to do a bone marrow biopsy.  I'm so scared you guys.  I've heard it is really painful. Has anyone had one done?  The other test is to find out if it's my Lupus.  Treatment will be high doses of I.V. prednisone.  Great (sarcasm).  I never thought I'd say this in a million years, but I hope it is my Lupus.  I understand the treatment and I know the pred will work very well.  What if it's not my Lupus but my bone marrow?  What if it's cancer?  Oh man, my head is going a mile a second.  I'm trying to not over think this.  I want the next step to be the prednisone, not the bone marrow biopsy.  Has anyone ever been knocked out for a biopsy?  I don't want to be awake for the pain and whatever else goes along with it.
 
My anxiety is is high right now.  Dangit, it seems every 2 years I have a crisis of some sort.  Enough.  I want off this ride....
 
Thanks for any input guys confused
 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in to be content.Phillipians4:11-13
35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 Co-Moderator for the Lupus and Fibromyalgia forums


MJLD
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Date Joined Jul 2007
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   Posted 7/17/2009 8:58 PM (GMT -7)   
Ginny,
I'm sooo sorry! Man! I really hope it's the lupus. Isn't that a common occurence with some lupies? I had severe bone marrow suppression on Imuran, they would give me blood and the next day my counts would be severely low. My nephrologist figured out that it was the imuran I had been on for a number of years. They took me off and I was fine. I've never had a bone marrow aspiration, but my nephew did. They gave him versed and he never remembered having them. I pray you don't have to have it done! I'm so sorry!!! I've had the iv steroids many times. Please keep us informed. Judy

Barbara Lee
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Date Joined Sep 2003
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   Posted 7/18/2009 7:48 AM (GMT -7)   
Hi Ginny;
 
I'm sorry to hear you're having issues with your platelets being low.  I hope that it's just your lupus causing the troubles.  I've had 6 bone marrow biopies done and I will say they're not very pleasant.  However, I was not sedated and I managed to get through the procedures.  They took samples from both hips so that means they have to do it twice.  I'm hoping and praying that you'll only need one side done. 
 
As you know I've got MDS (blood cancer) and if it's any help to you I didn't have issues with low platelets.  It was my red blood cells that was the problem and I was requiring  blood transfusions all the time that made them think I might have cancer.  Try to calm down and relax sweetie and take it one step at a time.  The hem/onc may not want a bone marrow biopsy they know the procedure is painful and they only do them if they need to.  He'll check your blood work and probably prepare a smear and look at your blood himself.  If you need the bone marrow biospy let him know about your anxiety and maybe they'll give you some valium.  I"ve never heard of adults being sedated for them, but you could ask.
 
Ginny, if I can be of any further help let me know and we can exchange emails and if you want I'll call you and go over the exact procedure and how it feels and such.  Hang on sweetie don't let your anxiety get the better of you.  Wait till you see him before loosing it.  I'll keep you in my prayers and if you want to talk to me just let me know.  I'll be happy to go over it with you.
 
Love,
Barb
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.


Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 7/18/2009 7:56 AM (GMT -7)   
Thank you Judy.  I am also wondering if it is one of my other meds.  Imuran could be the culprit.  I've been on it for 9 years though. I guess at any time our bodies could become sensitive to meds we've been on a long time?  I'll be asking the hemotologist a lot of questions and I'll be throwing ideas at him too.  Is versed a sedative?
 
Hi Barb.  Oh thank you. I will email you to talk about this more.  I know you have a lot of experience with blood issues.  It's so strange Barb, all of my other CBC blood work is normal.  The only one out of wack are the platelets.  I guess that is positive isn't it.  If I was having RBC or Hemoglobin issues everything would be more complex.  Thanks for calming me down! LOL, it's hard not to panic.  I have terrible "health anxiety". 
 
Valium is good! LOL
 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in to be content.Phillipians4:11-13
35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 Co-Moderator for the Lupus and Fibromyalgia forums


jhmom
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Date Joined Oct 2004
Total Posts : 2244
   Posted 7/18/2009 8:52 AM (GMT -7)   
(((( Ginny ))))) The Judy and Barb have given you great information, I just wanted to say I hope it's lupus too and nothing more serious! Hang in there, you are in my prayers.
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Tramadol (as needed) and magic mouthwash (for mouth sores)


MJLD
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Date Joined Jul 2007
Total Posts : 1048
   Posted 7/18/2009 9:01 AM (GMT -7)   
Ginny,
Versed is used alot for minor procedures, it is a sedative and in children it induces an amnesia (temporary). I've had it for kidney biopsys. It relaxes you and gives you that 'don't care' deal.

I had been on Imuran for a number of years before it started the severe bone marrow suppression. I had tolerated it fine and then suddenly I couldn't maintain my counts at all.

g*reed
New Member


Date Joined Jul 2009
Total Posts : 11
   Posted 7/18/2009 11:02 AM (GMT -7)   
hi ginny,
im sorry your going through this. i was hospitalized for ITP which brought down my platelet count, i was told that it was due to my lupus (actually thats when i was first diagnosed) my platelet count was down to 7k. prednisone brought it back up in a few days. praying for you, that all this due to your lupus.
p.s. Philippians is so far my favorite book (born-again 3yrs. in september)
g*reed
28yrs. old., lupus


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 7/18/2009 11:21 AM (GMT -7)   
I am sorry Ginny! I was really hoping that the Neurotin was causing the problems. The good news is High doses of IV pred seems to help everything! I am keeping you in my prayers and am praying things get better!

Amy

 

21 years old...Systemic Lupus , lupus nephritis , raynoids , Carpal Tunnel

Ultram, Prednisone, Cell-Cept, Lisinopril,  Ambien, Flexeril, Darvocet, Ferrious Sulfade, Calcium, Vitamin B12, Aspirin 81 mg, Vitamin C

The Old Normal is no more so I and we have to find a New Normal...

 


Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 7/18/2009 7:29 PM (GMT -7)   
Thanks guys. Now I'm wondering if it's the Imuran.... BAH,  I hate this so much! 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in to be content.Phillipians4:11-13
35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 Co-Moderator for the Lupus and Fibromyalgia forums


cured4real?
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Date Joined Dec 2005
Total Posts : 1944
   Posted 7/18/2009 8:34 PM (GMT -7)   
Hey ginny, I get it from my liver, but its just slowly creeping down. My rheumie does a serum electrophosphoresis on me due to my polyglandular dysfunction to make sure that I don't have POEMS which puts you at high risk for multiple myeloma. You can have myeloma without having a positive serum electrophosphoresis, but withoutme having extreme symptoms (except for spine, which they've examined) they aren't worried.

Barbs got good advice and I think she is right. You think one thing, then you see the oncologist and they have their way of doing things. There may be other things they want to do bloodwork or scans for.

My platelets being low could be to damge to my spleen and lymph nodes from autoimmune disease. I've had several lymph nodes swell up due to benign hyperplasia so far, and have more that were slightly illuminated on a PET scan. These can be from a variety of non cancer causes. So there may be other tests that might shed light on whats going on. I still don't know whats going on with all my lymph nodes, but whatever it is, its mild and slow in progressing, so they just watch it.

If a med has really damaged your liver and spleen, you could get copies of labs, and it may take a fairlylong while for the liver to recover after quitting meds.


I hope that they figure it out and you don't have to go through the biopsy, but if you do, I hope it is negative.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 669
   Posted 7/19/2009 11:45 AM (GMT -7)   

Really sorry you're going through this, Ginny - I don't know much at all about the platelet issue.  I do know that Versed is a very nice drug - at least for the heart cath I had (and my anxiety was through the roof).  It didn't put me out, but I felt no pain and was calm as could be.  My husband reported the same after his colonoscopy.  I remember looking at the screens in the procedure room with my heart/arteries etc., and just thinking "Huh, well, look at that".  Normally I have to switch off hospital TV shows if it gets too intense.

Try to steer clear of worst case scenario thoughts.  They are just not productive in any way.   Remember..."Worrying does not empty tomorrow of its troubles~it empties today of its strength."  That said - I know how hard it is.  I'm keeping you in my prayers - hang in there!

Hugs,

Lucy


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998; UCTD 2007
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn
 
 


crazykitty
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Date Joined Jul 2009
Total Posts : 4796
   Posted 7/20/2009 7:48 AM (GMT -7)   
Ginny,

Has your doctor checked for Pseudothrombocytopenia due to EDTA. I had a very low
platelet count, as low as 14. My Rheumy sent me to a hematologist. I had two bone marrow
biopsies. They came back normal. Rheumy thought low platelets were due to the Imuran.
It turned out that my low platelets was a condition caused by the chemical EDTA. This
EDTA is inside the test tube they use for blood collection. Sometimes people have
antibodies that bind to their platelets. These antibodies become activated when the blood
mixes with the EDTA causing platelet clumping. It is a rare thing, happens to 1 in a
1000 people. It happened to me. My blood is now collected in a citrate tube. I wish they
would of tested me before I had the bone marrow biopsies.
Good Luck to you.
Robin

Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 7/20/2009 8:44 AM (GMT -7)   
Robin! Oh my goodness.  That is unbelievable.  I will DEFINITELY get tested for that before any biopsies are done. Thank you, thank you, thank you!  I'm always that "1" in a thousand.  Always!
 
Were you having a lot of bruising though?  Any symptoms of low platelets?  I have a lot of bruising.  More than I used to get.  I have a lot of those little red petitchiae spots also. 
 
It's worth noting and asking my hemotologist about anyway.  I so appreciate this information.  I wish you had been tested before the biopsies too.  I'm glad you have answers to your mystery!
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in to be content.Phillipians4:11-13
35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 Co-Moderator for the Lupus and Fibromyalgia forums


crazykitty
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Date Joined Jul 2009
Total Posts : 4796
   Posted 7/20/2009 9:52 AM (GMT -7)   
Ginny,

I have always been an easy bruiser and my thighs are covered with petichiae. Before October 2008 my platelet range was low normal. Normal range is 140-440 K/uL. October 21
my platelets went down to 47, by January 27 my platelets went down to 14. My rheumy took me off Imuran. My platelets returned to near normal and then dropped to 70. He referred me to a hematologist and scheduled a spleen ultrasound. I was
freaked out! The ulrasound results came back normal. When I met with the hematologist,
he said the low platelet count was probably due to the meds or the disease. The bone
marrow biopsies were done 3-24-09( yes they are painful, but the pain is short lived) and
everything was normal. The Hematologist seemed stumped. I asked him about platelet
clumping.I always do a lot of research and read articles about it. He said the next time you have your blood drawn if the platelets are low have them do a retake using a citrate tube.
Two weeks later I had my bloodwork done at my Rheumys and my platelets were down to 14
again( I get myresults right away). Right away they did a redo using a citrate tube and my
platelet count was 191. SHOCKING!!!! That is when I found out that it was
PSEUDOTHROMBOCYTopenIA due to EDTA. Like I said it is rare 1 out of 1000 people.
I wonder though how many people have unecessarily have gone through unecessary
testing. I am back on my meds and haven't had any adnormal platelet counts.

I WISH YOU WELL :)
Robin

Post Edited (crazykitty) : 7/20/2009 10:56:49 AM (GMT-6)


Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 7/20/2009 4:03 PM (GMT -7)   
WOW, Robin that is shocking! You must have been so relieved! I had a CBC drawn today so I'll find out tomorrow what the number is.  I did have an ultrasound of my spleen done 2 weeks ago and it was normal.  I am so thankful you told me about this phenomenon.  When I talk to my Internal med doctor tomorrow about the results I'll ask her about this too.
 
My numbers have been bouncing all over creation also.  Slowly decreasing over the past 4 or 5 months.  The last few tests have been  70 - 56 - 47 - 90 - 75.  It's like rolling the roulette wheel. 
 
You're right.  I don't want to go through unecessary tests.  Especially painful ones.  The bone marrow biopsy is going to be the last test I do!! (emphasis on LAST).
 
I'll keep you posted!
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in to be content.Phillipians4:11-13
35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 Co-Moderator for the Lupus and Fibromyalgia forums


crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 7/20/2009 4:38 PM (GMT -7)   
Ginny, you must be really anxious to see the hematologist. Time seems to go slower when
waiting for appointments and getting test results. Keep me posted for sure.

Try not to worry. I hope it all works out well for you.

Robin

aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 7/22/2009 7:49 PM (GMT -7)   
Hey Ginny! How did your results come? Just thinking about you and hoping for the best :)

Amy

 

21 years old...Systemic Lupus , lupus nephritis , raynoids , Carpal Tunnel

Ultram, Prednisone, Cell-Cept, Lisinopril,  Ambien, Flexeril, Darvocet, Ferrious Sulfade, Calcium, Vitamin B12, Aspirin 81 mg, Vitamin C

The Old Normal is no more so I and we have to find a New Normal...

 


elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 7/23/2009 5:48 AM (GMT -7)   

Hi Ginny,

I'm sorry that you're going through this.  FYI, my sister had low platelets for months.  She eventually did have a bone marrow biopsy done.  She said it wasn't pleasant, but very necessary.  Her biopsy was normal, so thankfully she didn't have cancer.  There is no explanation for her low platelets (she doesn't test positive for lupus either), but she's on a medication to keep her platelets up and is being followed by a hematologist.  I'm certainly hoping that for her sake it is lupus, and not some predromal stage to a blood cancer like leukemia.

My mother had MCTD, and often had unexplained drops in her platelets.  I don't think it's uncommon.  And even though a bone marrow biopsy is a horrible test, I would encourage you to get it done and over with just to make sure it isn't something more sinister like cancer.  Perhaps, as others have suggested, you can request a sedative. 

Again, I'm sorry that you're having to go through this and I pray that the test is quick and painless for you.


Current dx: Rheumatoid Arthritis
Suspected dx: UCTD/Early Lupus
Current Meds: Enbrel, Plaquenil, Methotrexate, nexium, tramadol, nasonex,Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan, zyrtec, zegerid, aciphex


Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 7/23/2009 4:02 PM (GMT -7)   
Hi there Amy, thank you for checking in on me!  I had my blood tested on Monday and my platelets were low again. 66.  So the Neurontin is not the cause.  I'm going crazy waiting for this appointment with the hemotologist.  It isn't until August 13.  So for now I'm being careful about cuts, etc and making sure my blood doesn't get too thin from the blood thinners I have to take.  It's always a balancing act isn't it? 
 
Elcamino, thank you for sharing the information about your sister.  I appreciate hearing all sides of this!  What I'm hoping they will want to do is investigate every other possibiity first, in the hopes that they can find the problem without needing to do a bone marrow biopsy.  Cancer isn't being considered right now because all my other cells are totally normal.
 
On a slightly different note, I had a serious psychiatric assessment done this morning at the hospital.  My anxiety, depression, panic, etc is getting out of hand.  The visit went very well and they want to see my every week for 3 months.  The doc has upped my Zoloft dose as well.  I've been diagnosed with Clinical Depression, Generalized Anxiety Disorder, Panic Disorder and PTSD.  I kind of knew I had these already, but I needed a proper diagnosis.  I am praying that treatment will help me a lot blush .
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in to be content.Phillipians4:11-13
35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 Co-Moderator for the Lupus and Fibromyalgia forums


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 7/23/2009 8:09 PM (GMT -7)   
Remember, those fancy names for how you've been feeling mentally are just labels and don't mean you are going downhill or anything like that at all! All four of those are commonly found in Lupus Patients --

PTSD = often is the BIG stress that helped active our disease,

Panic Disorder = often a result of some of our meds, as well as being associated with chronic illness & PTSD (anything that makes us feel trapped & helpless)

Clinical Depression, General Anxiety == well duh, we have a chronic unpredictable illness, of course we're anxious and depressed!

A serious psychiatric assessment would show up the same on at least half of us! Defineilty on me, anyway.

It sounds like they are taking a double-edged approach - meds & visits. Sounds like a great plan, let us know how you are doing.

Now for the low platelets...how is this affecting how you feel? I mean, are you tired & shaky but mostly ok, or what? I just don't have a good picture in my mind of how this affects people. I sure hope they figure out a way to help you soonest!!

Cheers,
Lynnwood, Lupus & Sjogren's Moderator
Life is far too important to be taken seriously. - Oscar Wilde, 1882


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 7/23/2009 8:18 PM (GMT -7)   
Hey Lynnwood, thank you for the reassurance that I'm not losin' it!  The doc said the same thing about chronic illness being a trigger for all that crap.  I'm definitely in a low place right now.  I feel like I"m swimming in a vat of honey with a grizzly bear on my butt.
 
The platelet thing makes me bruise really easy and puts me at risk for bleeding problems.  Otherwise I don't know it's even there.  Platelets are only involved with blood clotting.  I can't blame my fatigue or shakiness on that! LOL.  I do have to be very aware of my INR right now.  Anything over 3.0 is a major no-no.  And if the platelet count drops below 30,000 (30), they will take me off the warfarin.  Otherwise I'll bleed everywhere and might cause all kinds of deadly problems.  Yeah, I'm stressed.... Monday's test was 66,000 (60).  Anything over 50,000 (50) is considered serious, but not dangerous.
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in to be content.Phillipians4:11-13
35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 Co-Moderator for the Lupus and Fibromyalgia forums


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 7/23/2009 9:17 PM (GMT -7)   
Hi Ginny:
 
I'm sorry to hear that your platelets are still low.  I'm sure you're really worried about it and waiting until the 13th of August is a real bummer.  You're doing the right things of being careful and making sure your blood isn't to thin.  I'm sorry to hear about your new DX's, I hope that you're able to get some therapy and it works for you.  I know it's tough dealing with all this, know that you're in my thoughts and prayers.  Please take care of yourself.
 
Love,
Barb
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.

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