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thptfischer
New Member


Date Joined Mar 2010
Total Posts : 5
   Posted 3/4/2010 11:43 AM (GMT -7)   
Hi Everyone! I've been reading some of the posts in here for the last hour or so and decided to finally join the discussion.  I just received some of my last blood results and I thought I would share to get your opinion. My doctor hasn't said anything to me about this yet, but I think he's been testing for possible lupus either rule it out or rule it in now for awhile.  I've tested high for CPK in the past, now it normal. I tested high for rheumtoid factor and now it's fairly low (9). My urinalysis was negative and normal in everything tested but all of my antinuclear test are showing indications of some type of lupus or sclerdema (my own opinion after days of research, LOL!)
Anachoice (TM) screen w/refl to titer, ifa
   anachoice (TM) screen:  Positive
Antinuclear antibodies, titer and pattern
   ANA pattern:  centromere
   Antinuclear antibodies: 1:32 H
My sed rate is well within range and so is my dna (DS) antibody.
I do remember that my double stranded dna is off last time, but of course I can't find those results right now.
 
I also just had a EMG on my upper arms (I had no idea why my doc did this except for what I've determined as the beginning of Raynuads phenomena. He told me he thought I had carpal tunnel which I told him I didn't think I did and the test proved I didn't. It did say I basically have a pinched nerve in my left elbow (that's what the tech told me) which I really didn't realize. The result say, "There is moderate severity of ulnar neuropathy with compression at the elbow."
In the last few months I developed a major lump under the base of the skull on the right side. Since that showed up, the pain in my neck as became so bad (even living on pain killers!) that I finally had to completely quit working. I've been on disability for years anyhow, so at least I do still have some money coming in plus the best medical insurance possible. I had a MRI done about 6 months ago through a pain clinic I was going to, and that showed 4 bulging cervical discs and 4 in my lumbar area. I have osteoarthritis, fibromylgia and I could go on and on....(GEEZ) I've recently started feeling totally exhausted constantly no matter whether I sleep or not nor if I sleep alot. I normally don't required much sleep, but that has changed drastically upon occassion. I've always been hyper, even been jokingly accused of doing speed most of my life due to my norm. I'm a type A (obviously) but my last job that lasted nearly 4 years was really not mentally stressful at all, just very physically demanding.
shocked
I just turned 55, female and have worked men's jobs most of my life so alot of the bone/muscle damage was basically expected, even though I hoped that working physically hard all my life would get me really physically fit...I guess I was wrong..
Anybody got any ideas? I've debated on the diagnosis I mentioned earlier, also Crest Syndrome.  Other ideas?
 
 

thptfischer
New Member


Date Joined Mar 2010
Total Posts : 5
   Posted 3/4/2010 11:50 AM (GMT -7)   
Oh yeah, I forgot about a few other things that might help or confuse even more...
Alot of the times my legs feel like they wouldn't support me. I have stabbing, sometimes burning pain around my knees (both have been replaced years ago). Sometimes I feel like someone is stabbing hot pins into my calves. My thighs feel like they have lumps in them when I sit down.
The pain in my neck is almost unbearable and like I mentioned in the previous post, I am and have been on some pretty potent pain pills for years now. (Oxycodone/acet 10/325, just went from hydrocodone recently) headaches, but they are sudden, intense..then gone! Major aching in my upper arms and stabbing pains there too occassionally.
Let's see, is there anything or part on my body that doesn't hurt in some way or another.....Yeah, a few..LOL!
thptfischer

thptfischer
New Member


Date Joined Mar 2010
Total Posts : 5
   Posted 3/4/2010 11:53 AM (GMT -7)   
...swellings at the base of both index fingers that I thought was rheumtoid arthritis (not shiny or warm to the touch though...)

aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 3/5/2010 2:02 PM (GMT -7)   
Hey there!!! Welcome to HW! This is a great forum filled with very caring and compassionate people. I am so sorry you are having such a difficult time. After reading your post, and seeing that you have a centromere antibody Crest syndrome seems very realistic considering 80-90% of people with Chrest syndrom have the centromere antibody...BUT i am not a doctor.

When do you go for a follow up to discuss the blood work?

redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 3/5/2010 2:31 PM (GMT -7)   
make sure you make an organized list for the doctor and see if you can get a a rhemuy who is a lupus specialist.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 3/5/2010 5:58 PM (GMT -7)   
Just wanted to add my welcome. So sorry you are having so much discomfort. I hope you get some answers soon. Judy

thptfischer
New Member


Date Joined Mar 2010
Total Posts : 5
   Posted 3/7/2010 3:31 AM (GMT -7)   
Thanks to all of you that answered my posts! Your acknowledgement feels nice! Amy, Redrose and Judy I would like to ask you all, what pain killer, if any...do you find helps the most? I just happened to be taking some courses on pain management to fill up some of my spare time after I had to quit working (what a coincidence, huh?) and found that even in pain management all pain meds really only stop about 30% the biological pain responses to the pain sensors. So, I noticed the meds you all listed all included several pain meds and I'm sure you've probably ran the gammit on all meds for every symptom, huh? How long have you (all) been diagnosed? How long did it take from some of your first symptoms you now recognize to get your diagnosis? What kind of doctor did the diagnosis?
Anybody like to research? I know it's a strange thing to have as a "hobby" but I guess someone has to do it and it least enjoy it somewhat, huh? LOL!
One more rather strange question for now.... Does anyone else enjoy taking these free classes online? I've been studying and getting CME's and CEU's, I can't do anything with them, but I print the darn certifications out. I guess as something I can look at and know I can do after all I've been through in my past.
I look forward to getting to know some of you.
By the way, I haven't made my follow-up appointment yet. My doc has me scheduled for another sleep study that scheduled for the 19th of March and then after he gets those results, his office will call to schedule unless there's an emergency between.
Diana
Diana (thptfischer) still not sure of diagnosis!


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 3/7/2010 5:42 AM (GMT -7)   
Hey Diana!!! The pain killer...hehe, nothing really works for my joint/muscle pain. Well, the only thing that works is prednisone. I will be honest, I get more results from Aleve than from Tramadol or Darvocet. The hydrocodoe listed is for my migraines and I don't know if its the migraine meds or the hydrocodone but between the two of them, it works amazing :)!

I have been diagnosed for 3 years. It started out as joint/muscle pain and then got to the point I could hardly walk. So I knew it was a rhuematic problem so I went to a rhuematologist. He ran blood work and apparently I came back book work for lupus. So it took me about a month until my diagnosis. Although, I was not taken seriously at all from the rhuemy that diagnosed me so I went to another one and I couldnt be happier with her.

I like to research but the sad thing is I don't remember half of what I research. Thats why I have a job that is repetitive and requires very little thinking. But, I have always been that way. I was diagnosed with ADD when I was a kid and once I started meds it got better but I stopped with the meds after I graduated HS and my memory has gotten pretty bad again. I think its more of a ADD thing than a lupus thing for me! so no, I do not enjoy them, i usually end up getting very frusterated. LOL!

redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 3/7/2010 7:39 AM (GMT -7)   
I spent more than a decade fighting for a dx. As to pain, I find nerve blocks work better for my most severe pain and nothing really touches it otherwise. I used to do research all the time and was very good at it but neurological involvment has caused me memory and concentration issues.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence

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