Was going to make a general post, but for some reason do not know how to do that (any help along those lines would be greatly appreciated), so putting some info here in the form of a reply. Planning a trip up to Mayo soon, due to such a lack of expertise in DC about this rare disease. With respect to lumps, I have found a small lump under my forearm skin before, and of course, start jumping to worst case lymphoma scenarios, etc. (Has anyone seen the research that seems to indicate that about 28% of MP patients have another, sometimes hidden, malignancies?) I plan on getting it checked out next week. Has anyone had elevated CRP (C-reactive protein) levels with negative ANA and normal sed rates with their MP? My platelets also went low but came back up. I recently experienced that, along with a measles-looking rash and low grade fever. I have not seen anyone mention those symptoms on here before, and wondering if they might be related to MP. Lately, Omega- 3 fish oil and flaxseed powder: one tablespoon in a protein drink daily, have seemed to calm down MP GI symptoms for me, along with probiotics. It keeps me off the pain meds, which recent legislation has made more difficult to obtain for legitimate patients. The harder part for me is keeping a good attitude in light of the fact that there is no real incentive for any drug company to develop a treatment, even if enough patients could be gathered for any type of clinical trial. Just too rare. Dealing with a poorly understood illness that waxes and wanes is, I think, the worse part. My heart goes out to all the sufferers on this site, and I'm so glad we at least have kindred souls with whom to share information and bolster spirits. I try my best to remain in the present and take one day at a time. ~Bill

Hello @billindc, I came upon this older post you made and wanted to see how you were doing.
It's kind of coincidental that, in your post, you mentioned your platelets being low. I was just informed my platelets were low and was advised to discontinue taking the 81mg aspirin regimen that I was told to begin about 10 years ago. I have not had my follow up to see if they came back up but am scheduled in January 2017. My baseline CRP was normal after I became asymptomatic. I also take 2,000mg fish oil and wish to use probiotics but haven't thus far. I am including some pickled products like sauerkraut in my diet to see how it reacts in the gut. None of this probably means much but thought I would throw it out there. Good points made on the pain meds legislation and research. Keep up the good attitude!
Is this the study you were talking about? http://www.cghjournal.org/article/S1542-3565(07)00224-8/pdf

If I may ask how did your Mayo visit go back in July? did everything work out well regarding the forearm lump you were worried about?
I hope your health continues to get better.
Best regards,
@vdouglas