i'm confused and baffled

[bewildered444]

my doctor has decided today to refer me to the rheumotologist, i've been unwell since october, my lymph nodes became tender and swollen and i had a constant sore throat/exhaustion/losing voice/sickness bug etc. i have had 8 weeks of blood tests and my RA came back borderline and i think he said the C3 C4 showed inflammation? he also said something about speckled and nucleus? in autoantibody test (i think, he said a lot today that i've forgot everything, sorry) i think he was trying to say there was something slightly there, a bit like a grey area? i'm glad he isn;t writing me off, anyway the shocker today was that what i thought was still lymph node tenderness in my neck and groin isn't? he checked and said they weren't swollen, but the pressure at the back of my neck is very real! my groin burns and feels sore when i walk and even when i dont. i get exhausted very easily, like just going up the stairs, by the time i get to the top i'm almost shaking, and if feels like i weigh about 20 stone (i'm about 9 and half) i get shortness of breath, heart palpitions, i get very hot sometimes, and i just ache all over most days, my ankles are always the worst, and my knees feel pretty bad too, one burns a lot. i've noticed over the past couple of weeks my shoulders are stiff in the morning and my chest is tight, i'm a non smoker, i dont drink and i'm average weight, i'm glad my Dr is as keen as me to get to the bottom of this but i'm stuggling to stay sane, i'm even beginning to doubt myself and wonder if its all in my head, but deep down i know the pain and aches are very real. i know nothing about RA, can you get it in your neck and groin? and can it be caused by a virus? can anyone offer me any advice? my Dr said i'm to make notes of anything i think is significant, i have so many different symptoms? i had a chest xray too and that was fine. does this ring any bells? i would be so grateful for any info and advice. thanks

[bewildered444]

thanks for your comments, i always 'slow down' come oct, as i live so far north,not much sunlight in winter etc, so a friend last year recommended taking vit D (and quite a high dose) which i did, and i felt better for it after a while, i wasn't as tired and had more energy, whereas before taking it i felt like 1pm was like 11pm i was so tired, but really i took it for a couple of months, then i started getting ill all the time, and with being so ill i stopped taking it and concentrated on trying to feel normal again.

i must admit i know hardly anything about RA, i'm reading as much as i can, and i want to be clear in my mind incase the rheumatologist asks me, and it seems like i was ill for 3 months solid before all this RA pain came? i lost my voice 3 times in the space of a couple of weeks and i didn't even have a cold, i also got the Norovirus? that was spreading half way round the world and everything seems to be full on for such a long time that i had little time to recover, now i'm just left with the pain which i do feel is getting worse week by week.

can you tell me what i should expect from the rhuematologist? they have been testing my blood for 8 weeks so i didn;t think he would test it again? (i was a bit concerned about the accuracy of the blood tests as they took 4 samples then some tests weren't conducted til 5 and 6 weeks after the blood was drawn? i was thinking maybe the blood sample would be untestable after that length of time???) maybe someone will correct me, :) i'm really trying to not let it get to me (mentally) but as you people will prob know already i have started replanning things as i am just not able to do as many things as i did before, and i haven't explained to friends why cos i cant be bothered trying to explain how i feel..if that makes sense.

sorry for the long post, i'm waffling a bit! i'm grateful for this site and the advice

[nanascraps]

I feel for you! I had a lot of those symptoms for almost 2 years. Dr's kept telling me it was all in my head or I was depressed. They would prescribe anti-depressants etc and nothing helped. Finally got into see a Rheumatologist and he has done a bunch of labs and the first thing that came back was my Vitamin D was very very low. He put me on 50,000 iu once a week and it has now been about a month and half and my muscle pain has improved a bunch! All my other labs came back and the only thing he said was that I have "autoimmune arthritis" which personally I think is just a term for "I don't know yet." He has since put me on Plaquenil 400 mg a day and Celebrex. I don't see any improvement yet but he said it could take 4-8 weeks to start working and I have been on it for only about 3 weeks. I hope you get an answer soon! My thoughts are with you! :)

[spastic]

Did they check your vitamin D levels?  I don't know anything about alternative health products.  I take a lot of prescription meds and I rely on them to keep me going.  There is a gel called BioFreeze that is really safe, I get it at my pharmacy.  It cools the skin, it feels really good and lasts awhile.  My son likes it when he has a track meet.

Back to the vitamin D thing, if you are low on it, it will make your muscles hurt, and I don't mean a little ache a big, nagging ache that is deep.  I am vitamin d deficient and take it religiously now.  It has helped tremendously with my muscles.

A lot of us here call the wait, LimboLand.  It took me five years to get dx'd correctly.  I finally had to take a leave from work last July when symptoms got bad enough to interefere with my life.  I am sure you will be dx'd sooner than that but be patient, it always takes time.  It is never easy waiting for the Dr's to figure it all out.  But hang in there.

Your Friend,

Ada

[bewildered444]

thanks for the info, i had no idea what this 'speckled' term meant. i am going to keep a diary as i feel things are getting worse (like my shoulders are starting to hurt) and my feet (the bottoms) have been burning tonight. a couple a years ago i had plantar fascitis (sp) and i've had that on and off this week too. i would love a quick diagnosis, but after waiting 8 weeks for all my blood tests and still only a little further down the line my main concern today is pain relief, i just wish i had something stronger than ibuprofen etc, i did go to the heath food shop today and bought some green lipped mussel cream, heaven only knows if that will ease the pain, but i was desperate for some relief, if anyone can recommend some safe alternative health products or food etc that i could try to ease the pain i would be really grateful. thanks for the above info, i think i'm having a bad day and i'm determined to feel more positive tomorrow.

[spastic]

Hey Sweetie, okay what test you had was a anti-nuclear antibody test (ANA).  I pulled this off of lab tests online for you.

  The ANA test is ordered to help screen for autoimmune disorders and is most often used as one of the tests to diagnose systemic lupus erythematosus (SLE). Depending on the patient’s symptoms and the suspected diagnosis, ANA may be ordered along with one or more other autoantibody tests. Other laboratory tests associated with presence of inflammation, such as erythrocyte sedimentation rate (ESR) and/or C-reactive protein (CRP) may also be ordered. ANA may be followed by additional tests that are considered subsets of the general ANA test and that are used in conjunction with the patient’s clinical history to help rule out a diagnosis of other autoimmune disorders.

ANA shows up on indirect immunofluorescence as fluorescent patterns in cells that are fixed to a slide that is evaluated under a microscope. Different patterns are associated with a variety of autoimmune disorders. Some of the more common patterns include:


Homogenous (diffuse) - associated with SLE and mixed connective tissue disease
Speckled - associated with SLE, Sjogren’s syndrome, scleroderma, polymyositis, rheumatoid arthritis, and mixed connective tissue disease
Nucleolar - associated with scleroderma and polymyositis
Outline pattern (peripheral) -associated with SLE

Everyone is different of course with their symptoms.  It can take awhile for the Dr to finally dx you with something.  I would start writing a daily journal for your Dr. this will help them with the dx.  I am sorry it took me so long to get to your post.  I hope this info helps some.  I am here if you need to talk.

Your Friend,

Ada