[Shufu]

Well, as you know I've been wanting my records. I finally got them this morning. After she looked me up and down and asked "what's going on? Why do you want your notes?"

:worried:

Anyway. Looking them over I've discovered some interesting things:

I have chronic problems listed as:
Neck pain
VSD (Hole in heart)
Migraine
Insomnia
Costochondritis
And fibrocystic breast (which btw, he never diagnosed me with, just said "something fibrous" was going on... ??!!)

He also listed arthralgia (joint pain) and chondromalacia (lack of cartilage in joints) as chronic. Interesting.

My Red Blood Count has been low on several occasions and white blood cell count has been low almost every time. My ANA (diagnostic of Lupus) was considered "equivocal" (haha ambiguous, nice!) and "probably not significant". (I don't have the titer results. They either said simply "negative" or "equivocal")

(I read that for lupus: "Low blood counts, such as low red blood count, low platelet count (thrombocytopenia), or a low white cell count (leukopenia): Results may indicate anemia, which commonly occurs in lupus" -- and I have low everything... and an "equivocal" ANA with rashes and joint pain, but it's still "probably not significant"!)

The last bloods I had were a year ago (almost exactly). Before that in May, my red and white blood count was at or barely above the lowest "normal" limit, and the time before that both were low... but I had a negative ANA.

In other notes from a CT scan of my pelvis and abdomen they said that my "adnexal structures are borderline in size", but "likely" within normal limits and say a correlation with ultrasound is recommended. I don't know what adnexal structures they mean and I never had an ultrasound ...

There are other results I have no idea about (creatinine and kidney function for example--though my level of 1/creatinine seems to be a bit low from the levels I've looked up).

The MRI I had says that there are lesions associated with migraine (due to the fact I presented with a history of migraines) but said that there could be other causes.

Apparently there's an "opacity" in my left lung which they said was either "scarring" or "subsegmental atelectasis" and looking it up, this "Platelike atelectasis probably occurs because of obstruction of a small bronchus and is observed in states of hypoventilation, pulmonary embolism, or lower respiratory tract infection."

On an ultrasound of my neck it said that "slight, asymmetric fullness is seen within the right tonsillar region. A discrete mass is not clearly identified".. (discrete meaning separate; distinct) Then said there was no mass.

So.

I don't quite know what to make of it all. The overall impression I get is that my bloods are consistently below normal but not drastically "OMG" so. My ANA was not normal but not hugely positive. My lungs and neck have something going on, but not something immediately obvious.

I feel like chucking in the towel (again!) There is something going on. My results are consistently "off" but not by an astounding margin (doesn't anyone look at trends? or multiple results together?) I feel like I need some kind of miracle to get a diagnosis.

Does any of this even make SENSE to anyone? I think I'm losing all sense I had....:worried:

 

[Katharine]

Hello Shufu,

Bloods can be very inconvenient in not showing anything spectacular and for years I had different things off - sometimes high RF factor, sometimes high CPK, sometimes leukocytes and lymphocytes out, sometimes a little inflammation... you get the picture.

Anyway, bloods are not the whole picture and only an experienced rheumy is going to be able to help you with that.

By the way, your ANA could change significantly over a year and seeing as the last was not actually negative I would certainly ask for that to be tested again.

I don't think you need a miracle but I'm not sure if your current GP is going to be of much help to you in this journey but you certainly shouldn't give up before finding out what exactly is going on with you and no, you're not losing it but you have to find a way to get yourself another doc.

Well done for getting your records - and honestly, a doc's practice that can't understand a patient wanting their records... well let's just say they need to joint the rest of us in the 21st century!

Katharine

 

[KarolH]

I am glad that you got your records and appalled that you were asked why you wanted them. Frankly, why do they care? It is your right to have the records, period!!!!! OK, now that I voiced my opinion here I will move on.:lol::lol::lol:

If you could look at my blood work in the last 5 years you would think it was a roller coaster ride of sorts. My ANA was negative for the longest time, wbc count was typically higher then normal, rbc count always normal, rdw count always high, lymphocytes and the other ones would fluctuate high to low and back again................nothing was ever consistent in my blood work. My sed rate and c reactive protein would be normal, then high, then low and normal again. When I tell you my numbers are all over the place and still are....that is the truth. Even my ANA will sometimes show negative but mostly always positive now.........go figure???

Blood work only paints part of the picture. Like a jig saw puzzle you must have a doctor that is willing to sit down and put ALL OF THE PIECES TOGETHER in order to paint a clear picture. These doctors can be hard to find and in my humble opinion they are few and far between.

Feeling like I am rambling on here I will stop now.:rotfl::rotfl::rotfl:

Just wanted you to know that I feel your frustration but don't throw in the towel. If your not feeling well then press on and find doctors that will work with you. That is half the battle won!!! Keep your chin up!:wink2:

 

[lazylegs]

I didn't know what the adnexal structures were either. They are the things that hold the uterus in place. Those would be the ovaries, Fallopian tubes, and ligaments.

Take care,
Lazylegs

 

[BigSis]

Well you've certainly been investigated:worried:

The trouble with lupus is that many scans and things are done to exclude other diseases rather than give a definate lupus diagnosis.....eg xrays to exclude RA, MRI's to eclude tumours or MS or whatever, since it mimics so many things.
I think thats why its such a nightmare to diagnose.
Good luck to you in your quest.

 

[Shufu]

Well you've certainly been investigated:worried:

The trouble with lupus is that many scans and things are done to exclude other diseases rather than give a definate lupus diagnosis.....eg xrays to exclude RA, MRI's to eclude tumours or MS or whatever, since it mimics so many things.
I think thats why its such a nightmare to diagnose.

I have been waaaay investigated. And yes, all the scans were to rule out things like cancer, or brain tumors, or RA. When the scan of my hands came back negative for bone degeneration, my Dr ruled out all autoimmune disease. Even though I had a borderline ANA and I've since read that Lupus pain that mimics RA doesn't cause any damage...

I feel bad at the moment, hands feel like they've been shut in a car door, headache, nauseous, exhausted... my rash on my face is back a little and my finger nails are all half white (bottom) and half red (top). I just.. am soooooooo tired. My poor son keeps asking me to play with him....

I don't know what I expected to find in the paperwork, but whatever it was, I didn't find it. I guess at least it showed me that there IS something going on, whether or not anyone else wants to notice it or not.

Now I guess... what? I don't know. Talking to my husband last night I said, "well, it's probably going to take some disaster or other to get a diagnosis" and he asked, "what if that never happens? what if nothing changes?" and I just about had a meltdown on the spot. That, in a way, is my biggest fear. That it will just mull along like this. That I'll be in pain like this every day, that I'll be exhausted every day, that I'll feel nauseous and migrainey every day...

But... part of my screams that I should be happy with that, because there are a lot of people a heck of a lot worse of than me...

:worried: