View Full Version : So frustrated...

02-23-2009, 08:48 AM
Hi all...

I've posted here a few times before but not for awhile now. I think when I was on last...I had just had my rheumy appt. and was waiting for my labs to come back. Well...according to the rheumy..all my labs were "normal"....even though I did have a C3 level that was a bit high...I guess in his mind it was normal so didn't bother to tell me about it? Anyways...he gave me a dx of fibromyalgia and got me started on Piroxicam and Flexeril at bedtime....said have a nice day and that was it. The flexeril has helped some but the piroxicam has done nothing!!!

The rheumy admitted that the low grade fevers, night sweats and palm rash aren't generally related to fibro so he basically referred me back to my GP to investigate further..."maybe it's your hormones"....grrrrrr.

So here I am...still having horrendous joint and muscle pain, low grade temps, night sweats, awful headaches, swollen lymph nodes in the armpit area, horrible fatigue and most recently muscle weakness and an extremely sore and inflammed tongue and mouth.

I'm also sick right now which is making everything a million times worse! I think I have a sinus infection and my tonsils are soooo swollen and painful. Not to mention..I have my period right now and that' awful too (I have endometriosis).

So....I'm not really sure what to do next. I do have a call into my GP...I just want to discuss things with him again. I guess I'm just not convinced that fibro is my only problem. Does anyone have experience with labs coming back normal but still having a lot of the clinical sx of lupus? I think I fit the lupus picture fairly well but the labs are telling us differently. I am so frustruted and so sick of feeling sick. 600 dollars to see this rheumy and I don't feel that I've gotten anywhere. There is another rheumy in my network and a lot of friends and family really, really like her! I wish I would have asked for her to begin with.....she is super busy and it would have taken a lot longer to get an appt with her...I was so desperate at the time..u know? I'm wondering if maybe my labs just haven't caught up with my sx? My ANA was normal but at the top end of normal.

Anyone have any words of wisdom for me? I am feeling so terrible and feel like I've hit a road-block already...:'(. I went home early one day last week because of my sx...now I've missed again today because of this crud I have.

Ok...better run....thanks for listening everyone..


02-23-2009, 11:37 AM
It is possible to have negative ANA & still have symptoms of Lupus. 95-98% of persons with lupus have a positive test for ANA. Therefore, less than 5% of people can have a negative ANA test, and still have lupus. Therefore, persons having some symptoms and signs suggestive of lupus, but with a negative ANA test, should be very carefully evaluated for a large number of conditions that can have a positive ANA test. These conditions, which can mimic lupus and have a positive ANA test include: mixed connective tissue disease, undifferentiated connective tissue disease, scleroderma, myositis, rheumatoid arthritis and several others. Some times, it may take a while before a clear diagnosis can be made, because the evolution Lupus may take some time. It is unfortunate that many doctors prefer to dismiss you rather than to continue testing while awaiting the evolution of the disease.
If the ANA comes back negative and you still display symptoms of Lupus, then the doctor should look for these four traits:1) High titer anti-double stranded DNA antibody
2) Anti-Sm (Smith) antibody 3) Biopsy-proven kidney disease 4)Biopsy-proven skin disease.

If your ANA is negative and you are still displaying lupus-like symptoms (low grade fevers, night sweats, rashes) then doctors will probably say that you have “mixed connective tissue disease,” “undifferentiated connective tissue disease,” “forme fruste lupus” or “hidden lupus”. Each has a specific and separate meaning and each describes a different form of illness. In any case, there are treatments that can be prescribed for your symptoms.

Can you request to see the other rheumatologist now so that the process can begin while you are meeting with your GP? See if you can make the change to a rheumy who will be helpful to you.

Peace and Blessings

02-23-2009, 03:22 PM
hi Olivia,

Reading your post was like reading my own bio. Only difference , I have tested positive for lupus since 1996, but I "did not have enough (being the operative word) symptoms. I was just diagnosed in Oct. of last year with sle, other undiagnosed auto immune syndromes, and fibromyalgia. Starting in 1996, I searched for someone to tell me that I was dying...i just knew i had to be. My first rheumy was "the best in Atlanta" and for months he just ran tests. So I went to the Mayo....they diagnosed me with firbomyalgia - even though my ANA was positive, i had eye problems, extreme small tissue pain around my joints, and had extreme pain and redness and swelling in my palms. The rheum at Mayo said "20% of people with fms have issues with their hands." I came home happy with a diagnosis, but still not sure if that was all. I also had blood in my urine. I went back to my rheumy and his physician's assistant said "Oh, dr.____does not recognize fibromyalgia" I walked out of the office with records in hand and never looked back. I found the most wonderful lady rheumy who, from my first appt. , said she did not think fms was the full extent, but there just was not enough information to make such a serious diagnosis. (I am now actually grateful to have had some time). This past August, my symptoms got so bad that in oct. she said she could not put it off any longer. So that is my past.

I am so glad that you are going to the new rheumy....why don't you call her office and beg for an early appt. Also, if there is a delay getting into my rheumy, I see her physician assistant, and am 100% happy with the care....plus, she has a direct line to my rheumy. I can usually get into see her pretty quickly. Anyway, just beg.....all they can do is say no. sorry for the dissertation.

Anyway, I don't have any words of wisdom....just want you to work hard for yourself....it will be worth it. I believe you should look for the best fit you can with a dr. because he/she will be your main advocate for many years to come. This phase of your life with any disease consists of building your team. please keep yourself number one.

I will be happy to help you any way I can,

02-24-2009, 03:13 AM
Hi Olivia,
Welcome to the site. My name is Kathy and I have SLE, Lupus and several other Auto-Immune disorders. I read through your post and I have to wonder if you have been tested for Pernicious Anemia due to the sore and inflamed tongue and mouth and muscle weakness. A lot of the symptoms that you describe can be related to Pernicious Anemia. You could also have Lupus along with it. I would definitely go in to see a different Rheumatologist, but I would also see the Primary Care doctor and ask him/her to run a test to see if you are B12 deficient. I would also ask them to rerun the tests for Lupus again as well. I hope that you keep posting and let us know what is happening with you.


02-24-2009, 07:37 PM
hi kathy,

can you explain pernicious anemia. I am b12 deficient, and give myself an injection once a week. I am not really diligent about the shot, and wonder if maybe i should be more devoted.


03-09-2009, 07:53 PM
Hi all...

Thank you sooooo much for responding to my post...I really appreciate it!!!! Sorry it has taken me so long to get back to you all! I've only had enough energy lately to just lurk..which is really sad!! Anyways...I talked to my PCP and he suggested I call the original rheumy that I saw and tell him that the Piroxicam is not helping the pain, my sx are continuing...including the palm rash, fevers and night sweats....which seem to be worse when my joint and muscle sx are worse...hmmmmm.

So.....I will be calling this rheumy tomorrow. I've been putting it off because I just don't want to deal with it...but I know I have to. If he brushes me off in the slightest...I will be calling my PCP and asking to be set up with the other rheumy. I should have just asked for this in the first place....(duh) but I guess I am just curious to see if he'll investigate things further. And...if I end up seeing the other rheumy...it will be another 6oo dollars out of pocket. My insurance will start covering 80/20...but not until our deductable is met...which is 1500 for family.

So...that's the update for now. I want so badly to get to the bottom of this...but as I'm finding out from all of you...that could literally take years..yeek. I will definitely ask my PCP about the Vit B12 thing too...thanks for the info on that!!!!

Ok...I better run...hope everyone is doing well and thanks again for all the support!!

03-10-2009, 06:03 AM
Pernicious anemia (per-NISH-us uh-NEE-me-uh) is a condition in which the body does not make enough red blood cells due to a lack of vitamin B12 in the body. Pernicious anemia is one of many different types of anemia. Having anemia means you do not have enough healthy red blood cells. When a person has anemia, the blood cannot carry enough oxygen to the cells of the body. The most common symptom of anemia is feeling tired.

In pernicious anemia, the blood cells do not divide normally and are too large. They have trouble getting out of the bone marrow. The problem is due to a lack of vitamin B12 in the body. Vitamin B12 is one of the B vitamins; B vitamins are found in animal foods such as meat, fish, eggs, milk, and other dairy products. Vitamin B12 is necessary for the body to make red blood cells. It is also needed for the normal working of the nervous system.

The condition was named "pernicious" anemia because it was often fatal in the years before the cause was discovered to be a lack of vitamin B12, and no specific treatments were available. Now it is easy to treat with vitamin B12 pills or injections. Pernicious anemia can be severe if it goes on for a long time without being treated. If it is not treated, it can cause permanent damage to the body.

Like you, I am not as diligent with my B12 shots as I should be. I do not have Pernicious anemia, I take the shots for my Fibromyalgia. Since you do have the condition, I would say that it is very important for you to be a lot more diligent about taking the shots. Do you also take the sublingual (under the tongue) B12 along with your shots?

Peace and Blessings