Ana 1/800 again

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Ann Ireland
Veteran Member

Date Joined Apr 2006
Total Posts : 511
   Posted 7/5/2007 2:59 PM (GMT -6)   
I'm in trouble AGAIN.
No one seems to be doing anything to find what is wrong with me and I am still getting sicker and sicker. Had to fight for the latest b loods.
My ANA is again 1/88 and my creatine Kinase is getting higher alnd rising. It has been hight for a good few years now but in March it was 234 and three weeks later 250 and this week 294, the highest it has ever been.
I have never felt so ill in all my life abnd now days in bed and suicidally depressed.
the normal Creatine Kinase levels should be 25-140.
PLEASE, if you get this message, please tell me for what follow up tests to ask for after this raised ANA, I see GP tomorrow in the afternoon. I am so desperate at this point and cry all the time, I feel I am dyig and no one seems to be doing anything
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 Mar 2006
Total Posts : 2573
   Posted 7/5/2007 4:45 PM (GMT -6)   

I am so sorry to hear that you are getting worse. I don't know anything about creatine kinase. Is that the test that indicates you have a neuromuscular disorder? What do the doctors tell you when they give you the results of your tests? I'm afraid that I can't advise you as to what tests you should ask for since your ANA is elevated, but hopefully others here might know. And I do hope you will be honest with your GP about how you are feeling physically as well as emotionally. When you say that you are suicidally depressed that raises a big red flag with me and I think you should talk to your doctor about your depression.

It has been a while since I've seen you post and I've wondered how you are doing. Please take care and let us know what your GP has to say.

Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept 1,000mg, neurontin 1,200 mg, prednisone 5mg, plaquenil 400mg, synthroid .15mg, triamterene 37.5mg, tramadol prn, lunesta 6 mg, actonel, tri-est (compounded estrogen) 7.5 mg 2xmultivitamin, calcium w vit D, fish oil, aspirin

Barbara Lee
Veteran Member

Date Joined Sep 2003
Total Posts : 2889
   Posted 7/5/2007 6:09 PM (GMT -6)   
Hi Ann:

I'm sorry you're doing so poorly. I like Pat agree a HUGE red flag is up with me by your comment that you're suicidal depressed. You need to seek help for your depression. I know you've been having issues and are frustrated with your physical well being. I have to say though, that your depression needs to be addressed and dealt with. The two problems go hand in hand. Your safety is top concern at this time. Please discuss your depression honestly with your GP tomorrow. Good luck and let us know how things turn out.

Take Care,
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, MDS (Blood Cancer). Mediport and tons of meds.

Regular Member

Date Joined Dec 2006
Total Posts : 239
   Posted 7/5/2007 8:50 PM (GMT -6)   

I am sorry things have taken a turn for the worse.  Here is a very basic but informative site about creatine kinase and possible new directions for you to investigate for treatment.  As I understand it, this level is mostly used to diagnose heart and or muscle problems.

As far as the high ANA you may simple be autoimmune deficient and may never get a diagnosis more than that.  My mother in law is in the same boat.  While she does have MSK disease (a kidney disease) she also has a sky high ANA and presents signs of both lupus and sarcadosis. She has been seeing one of the best nephrologists on the east coast for almost a year now and he has told her over and over again that many people are simple pegged as autoimmune defiecient when they present severe signs of several AI diseases. 

If you do a few Google searches you can find information by way of trials and studies about elevated creatine kinase levels and lupus.  It seems generally speaking the treatment to lower elevated creatine kinase levels is by way of statins and beta blockers.  From the research I just did it seems that elevated creatine kinase levels mostly exist in muscle inflammation and nervous system disorders.  Your family history would be in tune with that.

I also agree you need to get help ASAP for the depression.  If you are mentally strong and balanced you have a much better chance with your physical health and balance.

Let us know how it goes.



Regular Member

Date Joined Jul 2006
Total Posts : 245
   Posted 7/6/2007 8:25 PM (GMT -6)   
Oh Ann, I'm so sorry you feel so bad. Please talk openly with your doc. don't try & hide anything from him. I hope you get to feeling better real soon.

Veteran Member

Date Joined Dec 2006
Total Posts : 2818
   Posted 7/7/2007 8:17 AM (GMT -6)   
I Ann, I was just wondering what you found out from your doctors appt yesterday. I hope you get some news that will help. I know how depressing it is to feel so bad and no one helps or sometimes it seems like no oe cares. I don't know if you see somone for your depression but if you don't I think you mght want to think about it.
let us know
God Bless
Lupus, possible Crest, COPD, Cervical Cancer survivor. Osteoporosis
Prednisone 5mg, Plaquanil 800mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax.5mg
When things are really dark look up. You can see the stars.

Veteran Member

Date Joined Dec 2004
Total Posts : 8198
   Posted 7/7/2007 12:12 PM (GMT -6)   
  I hope you will post soon and let us know how your appt went and how your feeling. I also hope you talked to your doctor about the depression. It worries us when someone talks like that....((Hugs)). Please rest and take care. You are in my thoughts and prayers.
 Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Sensory Polyneuropathy
mirapex,advair,foxamax,donnatal,folic acid.
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.

Ann Ireland
Veteran Member

Date Joined Apr 2006
Total Posts : 511
   Posted 8/3/2007 3:09 PM (GMT -6)   
just seen my post of 7/5/07 that I wrote that my ANA was 1/88, wrong it was 1/800! Second time that high, Prolactin and another homone raised both in January and February, Magnesium raised, Folate raised, and in such a sick person they just say ah, it can be that raised, quite normal. Well, if it is normal why is it noted as abnormally raised?
As for the ANA being 1/800 for a person so sick how can they consider it a false positive.
I was never told of the benign blood tumor in my lower vertebrae in February and I've been in agony and I just thought it was lack of exercise cos of the neuromusculoar disorder. Of the CK being 294 when it should be between 25 and 150 they do nothing absolutely nothing. I was told by my gp that the neuro was going to do a muscle biopsy and felt he must have forgotten so reminded him, I've heard nothing.
In my FOI It states 'She is known to be a consistant complainer!!!! Wouldnt you be? Please tell me why should I at 54 and considerably intelligent and creative want to be more or less lying horizontal or travelling in a wheelchair? Practically 24/7 and feeling brutal crape to boot. Please tell me would any of you ask is ANYONE actually going to try and DO something for ME!?
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

Regular Member

Date Joined Aug 2006
Total Posts : 47
   Posted 8/3/2007 4:32 PM (GMT -6)   
Ann, CK is an enzyme that is secreted when muscles are damaged. It can be coming from the Brain, Heart or muscles. The dr should do Iso-enzymes to determine which. with a neuromuscular disorder I would assume it is muscular. The more damage the higher the CK.

Dx: RA, Fibromyalgia syndrome
Meds: Plaquanil 200mg twice a day, Cymbalta 60mg/day, Geodon 40mg/day Ambian 10mg/day Lortab 7.5 as needed

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