[1tiredmama]

Went back to my GP today to discuss the results of "all" my bloodwork. Turns out, after the ANA of 1:640 two weeks ago, all he ordered was a Lyme Test and an Anti-DNA! Both were neg, so he tells me I don't have Lyme or Lupus. He goes on to tell me that the "medical community" may not have an answer for me... Says he understands my frustration cuz he's frustrated. In the end,, he refers me to a rheumy, BUT warns me that the rheumy probably won't want to "tackle the big picture" (my long list of symptoms), but will just want to look at joint pain and bloodwork. He does tell me, though, that he is hand-picking this doc for me because she is more likely to think outside the box.

I don't know what to do because when I came home and looked things up, I read that a neg Anti-DNA does not rule out Lupus. I read that there are other tests that should have been run. I feel like giving up again. I am so sick of condescending doctors who think they know better than me because they've given me 15 minutes of their precious time!

I don't expect much from this rheumy as healthcare in my area is poor. I am a 2nd grade teacher. I am considering seeing the mom of one of last year's students. She is a GP. I did well by her son. It costs $7000 for one school year, and I make sure each child gets a $7000 education. She is really nice. Certainly, she'll treat me like the intelligent person that I am, and she won't be condescending to me. If I ask, she will look at the big picture and take the time to listen.

1tiredmama

 

[doris999]

Go for it Hun, you have nothing to lose.
I to had a titre of 1:640 & all other tests negative, and i don't know where to go from here.
Hugs.

 

[debatat]

Hi, I would say that being referred to a rheumy that your gp thinks is good is good news. A good rheumy will look at all your symptoms as well as running a full panel of blood tests. They will be interested in your other symptoms as lots of factors can influence joint pain. Gps dont always understand the complexities of autoimmune disorders as they are not specialists.

I would get your symptoms documented maybe keep a diary and take photos of any rashes, joint swelling etc ready to show your rheumy at your first appt.

Let us know how you get on.

Take care

Deb

 

[Katharine]

Hello again,

You are quite right that not having anti ds-dna does not rule out lupus! Also an ANA of 1:640 is perfectly high enough to be considered significant along with your other symptoms.

It is good that your GP has referred you even if with little conviction.

If you have any choice of rheumy do try and find an "auto-immune" specialist. That Mum who is a GP might be able to help there (?).

Best of luck,
Katharine

 

[Barb G]

I have been going through the same thing. It's humiliating, depressing, frustrating --- I could go on and on. What has finally gotten things going in a more positive direction for me are the photos of my rashes, bruises, mouth sores, inflamed blood vessels, blood blisters, enlarged and swollen SCM muscle, etc. Almost all of the physicians I have seen, including my rheumatologist, would deny my symptoms, even after they personally saw the symptom during office visits. When I started documenting the symptoms with photos, and making a record of providing them copies of the photos, they started to pay more attention (liability concerns?!) I'm not diagnosed with lupus yet but it hasn't been ruled out. When I saw my rheumatologist last, he stated he's leaning toward a diagnosis of Undifferentiated Connective Tissue Disease.

Don't give up!

Barb

 

[sam101360]

Everyone has given you the right answer - DON'T GIVE UP!!!

I am one of the rare +/- 5% who are almost completely serum negative...I have a DX of APS (truly positive on this), SCLE (Also positive - skin biopsy), SLE (serum Negative - kidney and eye involvement), RA (Serum negative), Sjorgrens (mild positive/xray positive), Reynaurds (Symptom positive).

You need to keep your records (notes and photos) plus get copies of your test results. You may need to eventually see a speicalist at a teaching hospital or Major Medical Center for a DX then a local Dr can continue maintenance and testing.

It sounds like the mom of your ex-student may be the best place to start, if she isn't familiar with lupus, you may want to gather some reliable information on the more obscure testing (Complliments, smooth muscle, etc.) that can be run to assist in the DX process.

Best of Luck - Stephanie

 

[Douglas]

Howdy,
I hope that your experience will be along the llines of mine: years (decades in fact) of frustration until an MD friend of a friend became interested. Truly medical care is often whom you know not what you know. Or what they know.
All the very best!
Douglas+

 

[1tiredmama]

Thank you all for listening to my frustration. After a good night's sleep, I woke up ready to pull myself up by the bootstraps. I bumped up my antidepressant, and decided to start walking for exercise each night and to drink more water. I'm probably making too much of my "symptoms."

The two skin lesions I had could be psoriasis or something. The redness on my face could just be sensitivity to heat or cold. The mild joint pains could be coming from my back--I have scoliosis. Seizures are usually from nothing in particular. It's the sleepiness I hate the most, but that can be treated to an extent with iron (slightly anemic). I think I just got caught up in connecting dots that aren't even on the same page. I'm not sick like most folks around here--just sick of 25 years of fatigue.

1tiredmama

 

[Lily]

Hi,

Have you seen a Neuro about your seizures? I would consider that a priority right now, it's far from normal

Are there other things on the criteria list that you can identify with? Sorry just looked back on your posts and not sure what symptoms you are having apart from those you just mentioned.

:hug:

Lily

 

[sam101360]

Hey, hold on now....I agree that you need to pull out of your funk, but I warn you not dengrate your symptoms. You know your body and although there ay be an alternate reason for the fatigue, do forsake your health out of frustration.

It may be wise to try your new regime for a bit and see if you feel better, but if not, I would suggest seeing the students mom and just making sure!

Best of luck = whatever you decide.

Stephanie