I have questions but I suppose a small introduction is in order first.
I have ATN and was diagnosed on June 27th of 2010 relatively shortly after having Shingles. Now, as of January 24th I have been diagnosed with Vasculitis. Yesterday I had more blood drawn. My Neurologist has told me in 3 weeks the tests will be back and we will know more about the Vasculitis and if they can diagnose the Lupus.
After reading many medical journals from Cornell, John Hopkins and others over the last few days, I have seen references to Lupus, TN or Vasculitis when reading about the illnesses/diseases separately.
Does anyone here have any combination of these? If so, can you share your information? Thanks so much.
I had a positive CRP, E Sedimentaion rate and a positive ANA. The new tests are a Imunofixation, High Sensitive CRP and a D Dimer.
If you had "ATN" in association with Shingles, then there's a fairly strong likelihood that you are dealing with Post Herpetic Neuralgia rather than ATN in a more general sense. PHN pain might ease as the Herpes Zoster virus is forced back into remission and your other Shingles symptoms clear up. If you no longer have the rash of Shingles, then ATN would seem a more appropriate diagnosis, regardless of how it started out.
Vasculitis can be a presenting symptom of Lupus, which can attack multiple body systems. From the little I've read on both disorders, I'd have to say that neither is fully understood by science, though their auto-immune character seems to be widely accepted. At least from your description, it would appear that you are receiving appropriate diagnostic testing.
ROCKHOPPER, I HAVE ALL THREE! I was dx'd with systemic lupus in Feb 2010 and TN this last October. I have vascular problems from lupus. I'm thinking INFLAMMATION is our key word here but my docs don't seem to put the whole picture together.
You can pm me at ■■■■■■■■■■■■■■■■■■■ if you want to. Sheila Wall (in this group) also has both and I know another girl on the yahoo lupie board that ALSO has TN and vasculitis.
Red, I wonder about the shingles connection myself. If the rash I've taken pics of (hey I'll upload a few pics) is actually "shingles" then it is the MILDEST outbreak of shingles EVER in existence. lol. BUT that being said, I've had Bells Palsy twice in the last 8 years.
I just don't know Red. I see your point though. Let me know what YOU think about the rash pics. Please keep in mind I have systemic lupus and am extremely photosensitive. I get vascular rashes and hives and lesions as well.
Also Red, YES the rash was in a "BAND" but as you see, it's not much of a rash. YES IT IS ITCHY., but I also have some solar urticaria (hives) I'm also positive for porphyrins but need to take the more detailed testing for porphyria. I'm sure it's just cutaneous. Like I said, the SUN is NOT my FRIEND. ;)
Thanks to all for the replies! Thank you very much Min :) Good to see you.
Jujubeee, that is just so nuts. How peculiar! I'm reading so much to try to understand the tests and at the same time keep a rational mind. I was expecting to just go in for the TN/PHN with the new Neurologist and just get a nod to how long he thought it was going to last since it presented after shingles or was it now true TN or ...etc. etc. And then I get these test results I so didn't expect. Will be pm'ng you in the future, thanks! I think I'm going to go to bed though for now!
I think it would be funny if I did have Lupus because of the association with the moon. I'm such a night owl! Hootie hoot!! Or more like a night wolf...woooo...ah-woooooooooo!! heehee
HI RH I developed Classic TN and Temporal Arterisis within 4 weeks of each other. TA is inflammation of the arteries, my neuro thinks the TA triggered the TN. Its 8 months since i have suffered a classic TN attack but i developed ATN.
At the moment my TA is under control as I am on steroids but I worry the ATN will worsen as I come down further on the steroids as I am on a reduction plan for the TA.
I'm not a medical doctor -- but Shingles cases can vary significantly in intensity between patients. The rash of which you sent pictures is rather similar in character to experiences reported by a few other Shingles patients I've talked to over the years, or seen represented in Internet postings. If you haven't yet been tried on Neurontin, then you may want to know that it has been shown to be effective against BOTH the pain of post herpetic neuralgia and (in some cases) ATN in a more general presentation. This is worth talking about with your neurologist.
Elstep:
Particularly with ATN, there are reasons to believe that more than one neurological or neuropathic mechanism can be at work. I find it completely believable that your ATN could have been "triggered" by a case of Temporal Arteritis, as an inflammatory mechanism. On the other hand, I've also talked with patients whose ATN presented "out of the wild blue", with no other obvious connections to inflammatory disease or discrete facial trauma.
Regards both,
Red
jujubeee said:
Also Red, YES the rash was in a "BAND" but as you see, it's not much of a rash. YES IT IS ITCHY., but I also have some solar urticaria (hives) I'm also positive for porphyrins but need to take the more detailed testing for porphyria. I'm sure it's just cutaneous. Like I said, the SUN is NOT my FRIEND. ;)