Hi I am finally posting!

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Veteran Member

Date Joined Jul 2009
Total Posts : 4796
   Posted 7/18/2009 11:21 PM (GMT -6)   
Hello Everyone,
First let me thank all of you for being here. I have been lurking around for awhile.
This forum has helped me cope and learn about dealing with the craziness of trying
to get a diagnosis.
My rheumy believes I have Mixed Connective Tissue Disease. I have never had a positive ANA. My bloodwork shows positive for RNP. I do have Raynauds, Fibromyalgia, Degenerative Disc Disease, Osteoporosis and Osteoarthrits.
I have a dent in my forearm and a punch biopsy was done. The results came back as a variant of Scleroderma. I have been seeing my rheumy for almost two years. He has had me on various meds, plaquenil to begin with; then added Imuran. I developed very low platelet counts, as low as 14. Rheumy sent me to a hematologist. I had two bone marrow biopsies performed. They came back normal. In the end I found out that I had Pseudothrombocytopenia. My body produces an antibody that attaches itself to my platelets. When my platelets come in contact to the chemical EDTA inside the test tubes my platelets clot. A citrate tube is now used to collect my blood. If any of you have low platelet issues I urge you to ask your doctor about platelet clumping due to EDTA. It might save you from having bone marrow biopsies. I am off the plaquenil
and Imuran.  I have been taking Methotrexate,Lisinopril, Boniva, Savella,Folic Acid,
Cyclobenzapprine and vitamin supplements.
I am a 57 year old. married woman who has the support of a loving husband, family and friends but only people who are dealing with a chronic illness understand.I know that you do.
I am glad to be here,

Post Edited (crazykitty) : 7/19/2009 9:23:21 AM (GMT-6)

Regular Member

Date Joined Jul 2009
Total Posts : 42
   Posted 7/19/2009 2:15 AM (GMT -6)   
Hi Robin nice to meet you my name is nona I am also pretty new here but have met alot of very understanding and kindhearted folks.
It also took me a long time to get a correct diagnoses I have lupus and rhumatoid arthritis ,that really stinks that you had to go through all
of those painful procedures I think you will find alot of people here who share some of the same issues like having all the symtoms of lupus
and neg ana test but it sure sounds like you have enough to deal with already im happy to hear that you have good family support you will find lots of support here . We do understand living with chronic illness I am 43 I am single I have a married 27 yr old daughter whom is very supportive takes me everywhere helps me alot although she is very sympathetic she does not understand the daily battle that people
like us fight she is healthy praise God! luckily i have never had platelet issues but i have heard others talk about it that some good advice on the collection tubes i would have never known that.
wellcome Robin hope to hear more from you soon let us know how you are or if you just need to vent from a hard day these are really good folks for that talk to you soon.
dx Lupus,whith  brain, kidney ,heart invovment
Rhumitoid Arthritis ,seizures ,autoimmune hepatitis.
Meds-planquanil, lamictal ,lopressor ,imdur ,nitro, vtaminD ,metformin,
synthroid, lortab, phenergan, xanax ,prednisone ,kenelog injections
cytoxan, remicade
  Never Give Up!

Regular Member

Date Joined May 2007
Total Posts : 474
   Posted 7/19/2009 9:24 AM (GMT -6)   
Hi Robin and welcome. This is a wonderfully supportive group of people - you will like it here.
I am sorry you had to go through so much before drs found the problem. Sounds familiar - and I do understand the need for thoroughness - doesn't help with the pain tho, does it? :)
You are so fortunate to have a loving, supportive family. But sometimes it's good to have a place to vent - or ask questions, etc. This is the perfect place!
Take care,

Dx: Lupus, sjogren's, celiac, severe allergies.

Daily Meds: Plaquenil, Zyrtec. Aciphex, Nasacort, Prozac, Ambien CR.
7-11-09 Started CellCept - so far it's like I've been given my life back!

Daily Supplements: Calcium, B-100 Complex, Daily Vitamins.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Darvocet, Prednisone.

New Member

Date Joined Jul 2009
Total Posts : 6
   Posted 7/19/2009 10:54 AM (GMT -6)   
Hi!!  I am a new user just posting for the first time today. It was nice to read your postings and know there are a lot of other people out there with the same issues I have.  I am a 39 yr old female, married with two children.  I have been diagnosed with Linear Schleraderma for 17 yrs. and Systemic Lupus for 3.5 yrs.  The Schleraderma is on the left side of my face and has destroyed my collegan. I also have a biopsy scar on my chin. They told me my schleraderma is centralized to my face.  What a great place to have it, right? :)  The lupus causes me to be extremely tired with joint pain in my knees, ankles, shoulders and hands.  I have found stress and sleep deprivation to be my worst enemies! My kidneys have showed changes as well.  My doc uses me as a case study with other docs and students at Vanderbilt Univ b/c my ANA labs run 1,000 to 1,2000! I take Plaquenil and Ambien CR to sleep.  Sometimes I have to take Prednisone as well. When I get really down I take methotrexate but it gives me bad headaches.  I am wondering if the Ambien CR is giving me anxiety b/c I have gotten a lot worse about that since starting it. I have tried to stop taking it but have SEVERE withdrawl symptoms.... DON'T EVER TAKE AMBIEN CR!! Has anyone else taken this? I fear it is making me worse.
It is wonderful to hear from others that have the same medical issues b/c a lot of people don't understand the mental effects this has on us.
Thanks! Arky

Veteran Member

Date Joined Dec 2005
Total Posts : 1944
   Posted 7/19/2009 4:40 PM (GMT -6)   
My son took ambien, and I have. I have liver disease and can't tolerate most drugs. The ambien did cause weird symptoms in me if I remember, and kept me up all night. It stopped working for my son, who used to take it to come off his Ritalin for ADHD when he was on it. He said it made him feel weird and didn't work.

I take klonopin at night for restless leg, and it helps me sleep and is very addicting, like valium, but I have been on the same dose forever and it still works. I don't crave taking more or anything, but if I don't take it, I know it.

I'm sorry you have all that wrong. I can relate. I get stiff patches around my wrists, they never biopsy, but they go away with pred or upping my plaq. Last time I got it on my face and it was tanned and hairy, but went away. I also have vitiligo and hyperpigmentation. Its a bummer. I look like a calico cat.

I hope that you figure out what is going on. Did they check your liver and thyroid and ammonia? Those things might be good for them to check if they havent.
Thanks for posting! I hope to read more.
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

Veteran Member

Date Joined Oct 2004
Total Posts : 2244
   Posted 7/19/2009 5:54 PM (GMT -6)   
Welcome Robin and Arky! We're glad you found us and hope you like it here. This is a great place filled with wonderful supportive people.
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)

Veteran Member

Date Joined Jul 2009
Total Posts : 4796
   Posted 7/20/2009 9:05 AM (GMT -6)   
Thank you for the welcome Nona, Fran, Arky, Marj and Stacie. I am very glad to have
found this great forum. I have been reading posts for a while now and feel like I know
some of you already. Just reading the posts I have learned so much, been cheered up
and given hope. THANKS !!!!!!
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