I finally saw the rhumey who was very nice! He ran loads of blood work. Main findings were
-Severe Vitamin D deficiency.
-Low white cells- neutrophils
-Rheumatoid Factor positive and raised
-slight Calcium deficiency
Everything else normal. I have been started on high doses of vitamin d.
My anti-dsdna and Ana (for lupus) were also negative. these can be negative even if you have the disease apparently, confusing or what ?)
Have any of you had similar blood findings and were you diagnosed with fibro ,lupus ,RA? etc?
I have joint pain ,(hips and shoulders) muscle pain , shoulder swelling all worse in morning with severe stiffness always worse in the 2 weeks before my period settling for a week or so after.
I am wondering if all this is just due to being so vit d deficient or if more is going on, I am awaiting my next app with rhumatologist but would love to here from any of u in the meantime.
Thanks a always
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Anyaz
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Hi sounds very similar to me, I had all those bloods done and more, have had two 'positive' ANA Lupus tests but then the more detailed ones came back negative so consultant thinks it is definately fibro and not Lupus, although wants to run test again in a few monts to be sure!
I too had low vit d, nor surprising seeing our weather! Is your thyroid function OK as I have an underactive thyroid too! all good fun not!
good luck with your next appointment, let us know how you get on,
LucyKris
p.e my rheumatoid factor is negative, but has been postive in the past
In the US, positive test results are not a necessary part of the SLE diagnosis as they may be negative at first and then turn positive later (true of most autoimmune/inflammatory conditions).
Here is info on the diagnosis of SLE (if the site asks, continue to the US site, not the UK one):
There is also the possibility of being given the diagnosis of Undifferentiated Connective Tissue Disease and being given treatment, without showing definite signs of one particular disease:
"When these conditions have not developed the classic features of a particular disease, doctors will often refer to the condition as "undifferentiated connective tissue disease" or UCTD. This designation implies that the characteristic features that are used to define the classic connective tissue diseases are not present but that some symptoms or signs of a connective tissue disease exist. For example, a person may have a special antibody in the blood, such as antinuclear antibody, along with muscle pains, but no other definable features of a classic connective tissue disease."
It is very hard to diagnose Fibro while there is an uncontrolled vitamin D deficiency because the symptoms overlap so much. So your doctor may wait until this is resolved before giving a definite diagnosis of Fibro or not. However, if you have a connective tissue disease, you are more likely to develop Fibro at some point.
Firstly, Thank you to al lof you for your support and advice, the community here are all so kind and helpful
I guess its just a waiting game to see if i improve, My GP didnt seem to think that the Vit D was the sum of all my problems, why i dont know ,as i tick all the boxes?
He didnt feel that my symptoms would flare in the cyclic pattern that they do then subside after my period if it were all down to the vit d.
He also said that the other de-ranged bloods couldnt be blamed on the defiency either.
The rheumey will no doubt have seen these things a million times over so im sure he will be able to help. I ll post after my follw up app. I think perhaps i could be in the early stages of some auto-immune disease who knows?
Anyway, thanks once again for taking the time to share your experiences, they're very much appreciated
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