Calling all sjs experts...

[ellenkerr]

Got the results back today from my chest ray.  I told my pcp I thought I needed one because I was short of breath and had been feeling bad for 2months.  This is the report I got:

FINDINGS: Heart size within normal limits. Hilar densities felt to represent central pulmonary vascularity.

On the frontal view, a very small, faint ill-defined nodular density has developed just lateral and inferior to the right hilum. Somewhat more difficult to define on lateral view. Suggestion of a few linear densities emanating from the inferior margin of the hilum on the lateral projection.

Radiography/Fluoroscopy

No consolidation otherwise. No edema. No airspace pneumonia. Majority of the lungs free of active disease, similar compared to the prior frontal view from 2010. No significant hyperinflation. Nodular densities on lateral view felt to represent either vessels or granulomata.

No effusions or pneumothorax. No significant hyperinflation.

Status post lower cervical fusion. A few levels of mild anterior wedge deformity thoracolumbar spine.

Impression: 1. Tiny ill-defined density infralateral to the hilum on the frontal projection. Nonspecific although small focus of perihilar atelectasis could give this appearance. Developing noncalcified nodule yet a possibility. With clinical symptoms of nonproductive cough, would suggest a followup study in approximately 4 weeks for reevaluation. If the density persists, then CT may be pursued.

2. Majority of the lungs free of active disease. No effusions. No significant hyperinflation

Do these abnormalities look like sjs symptoms to those of you who know about sjs lungs?

The CT scan for a kidney stone revealed lymph node involvement of the messintery and pancreas, and the ,report said these findings could be reactive but I should be retested in 3 months to check for lymphoma. The  report also said that phleboliths are seen in the pelvis.

Does this sound like sjs is actively having fun at my expense, or does it sound like lymphoma or something else  altogether?  I won't be back to my rhuemy for 2 weeks, and I'm anxious for a dx.  Any insight  you may have would be appreciated.

[irish]

I guess that in view of what they ray states you will be having a cat scan down the road. I would just go ahead and get this done and then if there is sometimes unusual that needs to get checked out, do it.

It is hard to know just exactly what the radiologist is thinking, but I think that he is being wise about the cat scans. It is not uncommon to have little areas in the lungs and much of the time they are not anything significant. However, when we have sjogrens, or any autoimmune disease, we always have to be proactive in checking out the lymph nodes. Reactive lymph nodes do occur but cat scans are good at sorting out what is reactive and what isn't. Reactive usually indicates inflammation or resolving infections. Waiting 4 weeks to have a cat scan usually gives the lymph nodes a chance to shrink if they are reactive nodes.

Sjogrens can cause things to show up in the lungs and can affect the pancreas at times. The only way to know what is going on is to get the scan.

I would encourage you to keep positive and don't panic. So many times we panic and waste energy and get ourselves so stressed out only to have things be ok. I always say there is plenty of time to panic later if we find out something is amiss. Hang in there and make the needed appts. Please keep us updated on how this plays out. Irish

[ellenkerr]

Thanks Irish.

I appreciate the reminder.  I would probably advise someone else  to the same.   if you haven't figured it out yet, I'm a type A personality  that wants an answer now!!!  Maybe God is trying to teach me patience...so far his efforts haven't been too successful 

The chest ray is supposed to be repeated (in 3 weeks now) and the pelvic CT in 2 months.  I think I should skip the repeat ray and just ask my PCP to schedule a CT scan of chest, pelvis, and the big lump on my thigh all for the same time in about a month.  I haven't found a new pcp yet...no doctor wants to take on someone in the middle of medical problem..and a part of me thinks I should sit tight until I find out more.  At least she knows a lot about me, which could prove helpful in this process

I  just realized in my desire to get this dx process moving, I scheduled  my lip biopsy for tomorrow morning and
A follow up with my opthamologist in the afternoon.  Oh well.  My eyes have gotten so bad that I can hardly see to type after the issue with the detached vitreous.  I'm asking him while I'm there to do the tests for dry eyes in order to have a benchmark and maybe help with dx.

Thanks for your support and encouragement, it means a lot.  I like your advice not to worry until I know  more.I like the old saying a friend of mine uses....."worry I interest on a debt you may not owe".

[irish]

I tend to agree with you about not changing doctors in the middle of a "crisis" as it is really hard to play catch up. I sort of have that going on with hubby and me. We sort of need to change primary care docs cause the clinic is not good about sending info to other docs. We have to call medical records each visit and request things sent. I do not have the energy to keep up with this. It is their issue cause all our other doctors are not in there system.

If we change primary docs then we have to drive 30 miles for the more simple things and that is another big trip. Medical care and keeping us is just the pits. Sometimes when we change in the middle of things we are the ones who suffer with less than acceptable medical care. I would hope that you can harness your patience and get through these weeks and the scans needed to get more info. It may well be that you will have to be referred anyway and then you might be able to check around and find another doc that works better with you.

Also, every time we change doctors we have to play catch up and often we are the ones who has to round up a lot of the medical records. Another perk related to autoimmune disease. Just my opinion. Good luck. Irish

[Styx]

Your X-ray results are basically normal. That's not to say that something isn't wrong though.

IMO, if you haven't had a chest CT, it would be good to get a high resolution CT regardless given your symptoms to look for small airway disease. If you've had a HRCT before with the same symptoms and it was clear, I wouldn't bother getting another one unless your symptoms are considerably worse.

Styx