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I'm so frustrated!

425 Views 10 Replies 4 Participants Last post by  mommyof4
Hi everyone. I know I have not been on for a while--sorry! Since I have posted last time nothing has got better just worse. I have gotten sooo bad that I can't even get out of bed in the mornings--I can't move my bones. I finally went back to my family dr on Thursday and they did another ana. This will be my 5th one. 3 of them were 1:80, one they said was negative(they never told me the #) and I got the results back today and this one was 1:40 speckled. It also says that my sedimentation rate is 1 and my rheumatoid factor is
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Your sed rate is "normal" and the rheumatoid factor is negative. ANA's can jump around greatly - for no apparent rhyme/reason. Mine has been 1:320, then 1:1280, then 1:2560 and it's not been bothered to be tested since then.

I've also always had a very normal sed rate, my normal value is between 0-2. Some doctors will mistakenly believe that this means that lupus/disease is not active. Have you been referred to a rheumy before? Or is your GP waiting until something more shows up in the bloodwork?

It sounds like you are stuck in no-mans land, with something clearly wrong but not enough blood work indicators to back you up (which some doctors will require it seems). I wish I could be more helpful, there are so many possibilities as to what could be wrong with you to leave you feeling this way. Just keep pressing on until you get someone to believe you, and work to figure out a cause and a solution.

In the meantime, have you been prescribed any thing for pain? NSAID's, etc.? Good luck to you and thanks for posting again. (((hugs)))
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Thanks Maia. So with the sedimentaion and the rhuematoid factor being fine, it doesn't mean that I am fine and I'm crazy? Here is what I posted a while back:

Hi y'all, I am new to this board and I am looking forward to meeting everyone on here. My name is Robin and I am 33 years old. I am a mother to 4 beautiful kids. I am getting really frustrated not knowing what is going on with me. I have had 3 ana tests done with 2 of them being positive. I think they were 1:80. They also mentioned something about a speckled pattern. The first time I had ever heard anything about lupus was when I was admitted to the hospital with severe hot/cold chills, fever, numb from the waist down and feeling really sick to my stomach. After hours of being there they told me that something was wrong with my liver(sorry but my memory is horrible-don't remember exactly what they told me) and they had to do more testing. They finally told me I had a severe viral infection. I was finally able to go home a week later. Since then I have had problems. I have bad headaches, pain in my right eye, tons of joint pain, memory problems, extreme fatigue, little red spots(size of a pin head that have come pretty rapidly), reddish/purple spots(look like little blood vessels) all over my entire body including face, muscle spasms, cramps and burning in my legs, having trouble swallowing and sometimes talking, numbness and tingling in hands, fingers, legs and feet, hives, lower stomach pain, loss of strength in hands, arms and legs, sleep problems, dry mouth and eyes, sores in nose and mouth, itchy bumps on scalp, hair loss, swelling in hands, legs, stomach and feet, white fingernails with pink lines at the top, red splotchy palms, darker fingertips, rash on legs and I have had pneumonia 5 times. I know I have more wrong with me but my mind has gone blank. At times I am in soooo much pain I can't even walk. Does it sound like lupus? I had a appt. with a rheumatologist but had to cancel since I don't have insurance. They wanted anywhere from $280 to $410 for 1 appt. My hubby is the only one that works since I don't have the energy to.

None of that has changed. Now I sometimes feel like my foot is wet and it's not. My face and lip goes numb. I keep getting staph infections,bacterial vaginitis(sorry), something bacterial/yeast going on in my mouth. Headaches with neck stiffness, I was recently rushed in an ambulance thinking I was having a heart attack but after hours of being there and needles being poked everywhere they said it was a virus on the lining of my lung(no clue what that meant). Oh, and horrible diarrhea that can last a week at a time(sorry for that one as well).
I know that there is something wrong and I'm tired of people acting like theres not. The dr is making an appt with the rheumy. She said they will get back with me in a day or two. The only problem is I can't afford it but I know I need to go this time. No insurance sux! The only thing they gave me besides antibiotics is Mobic/meloxicam. So I guess I wait and see!
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I don't think you're fine, and I don't think you're crazy. Especially not just because two blood tests came back "normal"! Try to find out what virus they said you had that caused the liver problems. Hepatitis C can cause many symptoms similar to lupus, and is usually tested for to rule that out as a possible cause for your symptoms although we have had a few members here that have had both lupus and Hep C. Those chest pains sound like pleuritis (which I've had many times myself - very scary that first time especially!).

I think you really do need to keep that rheumy appointment and make a good faith effort to get this sorted out. It can be expensive, but a minimum of blood tests could be run to help keep costs down. If there's any way to get on a health insurance plan, now is the time to do it! Good luck to you with all this...
Thanks Maia :)
The rheumatologist just called and my appt is Dec 9th. I have to drive a little ways to get there because the one rheumy that is near us can't see me til the end of march. I'm hoping I am one step closer to finding out what's wrong with me.

Off to go plant that money tree in the backyard so maybe it'll grow enough for me to go. :lol: My oldest dd's b-day is Dec 5th and then we have christmas shortly after. Just don't know how we are going to do it. Oh wait! I still have some miracle grow!!!!!!!!!!!!! :hehe:
Now I'm really confused!!!!!!!!!!!!

Ok, I just went and picked up a copy of my records at one of the clinics I have used. For some reason I have been lied to :( I was told my ana never went beyond 1:80. I hope someone can help me understand this.

9/17/2004 1:320 speckled
TG 223 high
VLDL 44.6 high
sedrate 25

6/20/2006 1:640 speckled

9/5/2006 1:80 speckled

11/29/2006 1:80 speckled

11/6/2008 1:40 speckled

It looks like they only did the more thorough test in 2004. I don't even know what TG and VLDL is. Plus I asked for my whole record and they only gave me 14. Half of them I can't read :( I'm not too sure what all of these numbers mean but I'm pretty ticked that they lied to me. I wonder why they would do that.
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Hello Robin, I am in the UK so no help to you with how your medical system does things. Just wanted you to know I am thinking of you.
IF you are taking Meloxicam you may need to take something like omeprazole as well to protect your stomach. (Apologies if you already know this)
x Lola
It's not that uncommon for information to be with-held unfortunately! I've seen this happen several times over now... it's a good reason to get copies of all your records, huh?

TG I'm pretty sure is triglycerides which were a bit high (not a good thing but they're not too high either); VLDL should be very low density lipoprotein which is a part of cholesterol testing.

With additional information, maybe now you can take it to a rheumatologist and see if you can be treated for some kind of autoimmune connective tissue disease. Good luck!
Thanks y'all. I can't wait til the rheumy appt. so I can at least know a little of what's going on. Well at least I hope. I can't believe they kept that from me. Can you please explain the 1:320 and the 1:640? I'm sorry, I don't know the different levels.

Lola, I really have no clue about any of this except that I feel like sh*t. What is omeprazole?
Hi there

The difference between the ana of 1:320 and 1:640 is one dilution as it doubles each time they test it so it works like this 1:40, 1:80:, 1:160, 1:320 etc. It means therefore that the ANA was still detectable at the dilution of 1:640.

The ANA only needs to be positive once to count towards a diagnosis as it isnt reflective of disease activity or significant in terms of disease severity. Speckled is the type of pattern observed in the test and can have some clinical association. Speckled can be seen in people with SLE and Sjogrens Disease for example.

Tests are measured against the lab 'norms' which can vary from lab to lab and country to country. For example your SED rate (which is a measure of inflammation) at 25 could be slightly up if your lab rate considers 1-20 to be within normal range. My lab measures 1-12 as normal for SED rate but I have seen 1-20 quite a lot with other labs. It just means they have different ways of testing the SED. Your lab sheet should have the 'normal' range beside the SED rate. The SED rate can go up and down and even though it wouldnt confirm or deny a diagnosis, it all helps to put a picture together for your doctor. Many people here with Lupus never have a high SED rate while others have a consistently high one.

Some NSAID's (Mobic is one) can cause stomach upsets and many of us are on meds to protect the stomach. Omeprazole is one such med. Your stomach issues could be caused by the NSAID and thats what Lola was saying. It might be an idea to try something to protect your stomach to see if it helps.

Best of luck with your upcoming appointment!

Luv n stuff
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Thanks Joan. I'll ask them about the omeprazole.

I called the dr office back and asked why they didn't give me all of my records. She said she thought I only wanted the recent ones. WTF? I never told her that. I have had problems since my son was born in 2003. After I had him I bled and bled and bled for 3 months. They finally did a hysterectomy and found that my uterus was filled with fibroid tumors. I have been sick since.
Well, I just picked up the rest of my records.
9/9/2004 went in for numbness in legs-fatigue
9/17/2004 still not feeling well-numbness-feet and legs are swollen-fatigue positive ana 1:320
6/20/2006 numbness in legs,dizziness,feels like passing out they ordered a LE Prep then it states no reference lab does LE prep ana will tell positive 1:640
All of the other visits are almost exactly alike except for some added ear infections/back pain.

It seems like everytime I had an ana done I was having some type of numbness and fatigue going on. I'm just trying to find out as much as I can before the rheumy appt. Dec 9th seems like a long time.
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