VERY CONCERNED-UPSET

[ginak]

I have an appt to go and see the LLMD on Monday. I had been looking forward to this appt for a while. Yesterday, I got a call from my endocrinologist, who told me that she does believe that I could have Graves Disease. However she sounded very serious and told me that she needed to speak with me about my CT scan of the abdomen. Last week, I had a ct scan of the abdomen because my endocrinologist wanted to view my adrenal glands. I have had a series of neurological issues that include tingling, numbness, internal tremors, and muscular type pain, along with ringing in the ears on both sides, along with rashes. I have been worked by up 2 neuros, rheumatologist, endo, PCP, ENT, cardiologist, ID, etc. She called me on yesterday and told me that the test revealed a 4 cm non-specific mass behind my pancreas and in front of the aorta. I have not had any nausea, dizziness, constipation, etc. I have low Vitamin D and was dx with Epstein Barr virus. I also have an increased ESR. She mentioned that this could easily bowel or possible an infection. She kept saying that it was a non-specific mass. Of course I am upset. The endocrinologist discouraged me from seeing the lyme doctor. Right now, I am too emotional to make any logical decisions because I am of course, starting to think the worse. My husband is insistent upon going to the lyme doctor. I just didn't want the treatment plan to interfere with anything that the surgeon may have to do. Please let me know what you think this could be and let me know if you think I should still keep the appt with the LLMD. The appt with the surgeon is on Tuesday and the LLMD's appt is Monday.

[patsy10]

Good luck tomorrow.  Keep up posted.

[ginak]

Thank you all for your concern and words of comfort. I am going to see the LLMD. I really feel like that this is an incidental finding. The report states non-specific mass or possible bowel. It can't hurt to go to the LLMD and maybe I will find something out that can help with all of this. I will keep you informed. Thanks for your care.

[JackieCalifornia]

So sorry to hear this, but I agree with everyone:  don't borrow trouble, and wait till you get the endo appointment.

In your shoes, I would go to the LLMD appointment on the theory that it can't hurt.  Cost time and money and aggravation maybe, but you've got the appointment and a supportive spouse, so 'just do it' would be my take, for what it's worth.

Be strong as you can; let us know what happens.

[wonko]

I'm also sorry to hear about this concerning news.

My advice, which I'm not sure I'd have the wherewithal to take in your shoes, is this:  If your LLMD is like mine, the appointment is expensive, outside of insurance, and requires several business days notice to cancel.  From a practical point of view, you could still go to avoid being charged for a last minute cancellation.  

If you go, bring some one with you if you can, and explain that you are there for his/her opinion, but be clear you will not begin any treatment or testing until after your endo appointment and resolution of the scan finding.

I hope the next few days go well for you.

[cindy903]

Going to the LLMD can't hurt. But just be open at this point to the possibility of something other than Lyme, which is a blessing. Many other things are treatable and even though I believe one day they'll close in on the treatment for LD, that kind of progress is still under way.

Try not to worry until you know more. It could be nothing serious.

Keep us posted. Good luck.

[jason80]

Since Lyme tends to be a dx by process of elimination, I think it's useful to focus on how your symptoms might be related to your CT scan to completely explain your symptoms. Hopefully this is the case.

If you do see LLMD, then be sure to see if he/she has any feedback with others that had anything that you've seen with the CT scan (i.e., does Lyme cause growths?). I would be surprised if a LLMD would give you the same dx as he/she would make in light of having concrete evidence of something else going on.  I expect most people seeing LLMD have gone to all traditional doctors because they have received no other dx. Not your case.

BTW, I went to LLMD months ago and did blood work to get another option/dx, but haven't done anything else. I certainly wouldn't rush into any therapy suggested by a LLMD if it contradicts what the Endo advised and w/o them each understanding what steps you're taking.

Try not to stress and hope things improve.

[patsy10]

I'm sorry about yet another roller coaster ride.  You and your husband have to make the decision about the LLMD.  Abnormal test results are very scary.  Just remember, many times the results are benign though and just incidental findings.  I and others I know have had more than one incidental finding on scans that turned out to be nothing. You won't know until you see the surgeon on Tues.  You could go and see the LLMD, tell them what is going on and see what he or she says.  You don't have to start any treatment until you know for sure what is going on.  Just getting an evaluation doesn't mean you have to start anything on Monday.  It could be quite expensive though and a distance to travel.  These are things you have to consider.