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Ann Ireland
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Date Joined Apr 2006
Total Posts : 511
   Posted 10/1/2007 3:56 PM (GMT -6)   
Remember a month ago said I'd been to a top guy in London Prof. Graham Hughes who suggesed that I started on Heparin injects the day I got back to Ireland? Nought has happened.

I am very sick. Went to see a supposedly very good prof of rheumy suggested by the Sjogren's Assoc here in Ireland.
He said he would 'discuss things with the neuro'.
He also said that 1.800 ANA meant nothing as did a raised prolactin, neither raised ESR or CK.
I told GP today that that was it. I couldnt take any more and wanted to go back into hospital.

I am very weak, I find it hard to eat, I am shattered tired all the time, sensitivity to noise, light and movement stimulai far, far too great. I feel nauteous all the time and my walking is crap, apart from being weak it is ataxic and jerking and my feet and hands are doing all sorts of weird contortions.
I told GP that if I were married that my husband would be creating if he had his wife so ill for so long and in bed all afternoon for thats too long to be cooking his own dinner!
I really really feel either its because I was in the psych system or am single or put in complaints about ill treatment and BOY I can attest to ill treatment at the hands of the gastroenterologist.

I am again on the edge of total dispair.
You can see the muscles are wasting. My hands are like a ninety year old and I ache everywhere, my whole muscle and skeletol struccture is agony, my fingers muscles and bones ache and my right wrist now can carry no weight neither can my shoulder and my neck and spine is agony.
I find it difficult to turn in bed during the night as body seems rigid in pain.
I went driving today to get a birthday presi for my twin sister - and got lost. Nothing wrong with my driving but alot wrong with direction and all that sort of thing.
Her presi cost a fortune but she had always wanted a georgian dolls house since she was small.
This was a bit rough around the edges so will give her loads to do and she was like a child as she 'played'all day with it. I lay on a sofa too ill to hardly notice or even be pleased I went to the trouble.
I was half asleep and really too unwell to even care or even feel thrilled that I had done this for her.
She has Parkinsons and was scrabbling around the floor like a four year old.
I am back to square one and I donno how to keep going.
Sorry folks, I'm really sorry.
Ann Ireland

Congenital Rubella Syndrome (CRS) Severely Deaf, Hypothyroidism, Pes Cavus, Crohns Disease, scoliolis, Hiatus hernia, diverticular disease, neuromuscular disorder (?parkinsons) movement disorder, ? another autoimmune disease.

150mcg tyroxine, 20mg pantoprazole, 10mg Cipramil, 500mg 2 3times a day Mesalazine, 3mg Entocort, 62.5 Sinemet, 30mg Tamazipam, mystatin, sudocream

Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 10/1/2007 10:16 PM (GMT -6)   
Oh Ann . . . you ARE in very sad shape.

Can you just show up at the ER??? You sound too ill to wait for next appointment . . . have sis take you to the hospital and tell them how ill you are. Use your post above . . . just print it out and add all your other medical info and bring it with you.

Oh you poor thing. Hot tea for you as well!!

Keep us posted sis!

Prayers and Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

Veteran Member

Date Joined Feb 2003
Total Posts : 5514
   Posted 10/1/2007 11:02 PM (GMT -6)   
Ann, please don't ever apologize for telling us how things are going for you.  I have been wondering how you were and I'm glad you posted.
You do sound terrible.  I really wish the doctors would just take it seriously and get you the treatment you need so badly. All I can offer is some hope for you and some encouragement.  Just take life every 15 minutes, is what my friend tells me! 
You're in my thoughts and prayers Ann.  Talk to you soon,
I can do anything through Jesus Christ who strengthens me.  I have learned in whatever state I am in, to be content.  Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(stroke),Sjogren's, Raynaud's, seizure disorder, libman sach's endocarditis, vasculitis, sacroiliitis, Neutropenia, thrombocytopenia. Prednisone, Imuran, Coumidin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus

Veteran Member

Date Joined Mar 2006
Total Posts : 2608
   Posted 10/2/2007 10:55 AM (GMT -6)   
Ann, your suffering just seems to worsen and it's so hard to understand why you can't get any help or any relief. My heart just breaks for you. I'm with Rosie and would run to the nearest ER. Don't ever hesitate to come here and pour out your heart. That's what we're here for.


Lupus, Sjogren's, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, multivitamin, calcium w vit D, fish oil, aspirin

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