SarahA33 Posted January 2, 2015 Report Share Posted January 2, 2015 Happy New Year, everyone! I hope you all are off to a good start in 2015..I have been making slow but steady progress at the Cleveland Clinic. I have recently gotten more lab results back and I ended up testing negative for the JAK2 mutation as well as other myeloproliferative disorders. However, I still have quite elevated platelet counts and WBC's, as well as high C-Reactive Protein. The hematologist there specified that this was inflammation occurring somewhere in my body. Does anyone have elevated levels of any of these as well? I'm trying to understand what kind of inflammation would cause such high numbers. I return on January 14th. Just throwing this out there -- *I did a search throughout the forums and read some great posts about others who have had elevations of the c-reactive protein especially. Could this possibly be a pots relation at all?Anything that you guys can think of that may help would be really useful. Thank you.. wishing you all the best!Sarah Quote Link to comment Share on other sites More sharing options...
arizona girl Posted January 2, 2015 Report Share Posted January 2, 2015 Hi Sarah,Been following your story. Yes I have had elevations in both those labs. I turned out to have several autoimmune diseases along with an immune deficiency. While they point to inflammation they are considered non specific. With the elevated wbc and platelets. There are immune deficiency conditions and autoimmune diseases that can cause these. Have they tested you for any hemo autoimmune disease? With the elevated infection markers, have they tested you for any primary immune diseases? The main test would be a total quantitative immunologlobulin, which tests igg, iga, igm, along with sub igg panels. I like the website http://primaryimmune.org as a good resource on these conditions.My dysautonomia was also hyperandrengergic. With elevations in both my bp/hr, along with sudden syncope when pushed to high. My catecholamines almost triple on standing as compensation for the small fiber nerve damage of my autonomic nerves. Skin biopsy proved my loss of nerve density or sfn. While the autoimmune attacks did their damage, my symptoms did not get as severe as yours. I have hashimoto, lichen planus, and undifferentiated connective disease. Had a positive skin biopsy pointing to early lupus lesion and positive ana's and smrnp and ssa at times.Treating the autoimmune diseases and hypogammaglobulinemia, infections when they occur has slowed progression, not cured by any means, but for now I'll take any improvement or be grateful for not getting worse for now.Hope you get your answers soon and on to treatment. I know how difficult and stressful the diagnostic process is, hope your on the other side of that sometime soon.I'm praying 2015 will be a positive and Happy Year for us all. Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted January 2, 2015 Author Report Share Posted January 2, 2015 Hi Arizona, yes they've tested for primary immune but ruled it out.. My platelets are still over 800,000 and the hematologist I see there said that w/ Primary Imm. platelets are usually low. Plus I'm never really "sick" w/ cold, flu-like or respitatory infectionsWhat did your qsart show? Mine wasn't consistent w/ small fiber neuropathy however showed post-ganglionic sudomotor abnormalities. Whatever that means?!Thank you for your kindness, I'm making progress but its slow. Yesterday wouldn't even be fast enough for all of these tests to be over. My new years resolution is to have more patience.The M protein panels have come back with elevations in some of the tests, and the protein was identified in the last lab test.. MPA Kappa, Lambda & IGG were elevated also but were ruled out as nonspecific w/ return of the panels checking for myeloproliferative and jak2. Quote Link to comment Share on other sites More sharing options...
corina Posted January 3, 2015 Report Share Posted January 3, 2015 Happy New Year Sarah! I don't have much to add other than that I hope your doctors will figure things out soon! Quote Link to comment Share on other sites More sharing options...
gjensen Posted January 4, 2015 Report Share Posted January 4, 2015 11 more days for the next step. I hope that it goes fast for you. This illness is giving me a lesson in patience. Something I was short on before.Your lab results are interesting, and I hope they lead to answers, and solutions. Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted January 6, 2015 Author Report Share Posted January 6, 2015 Hi Corina and Gjenson,Thank you both for the support. I am getting closer to making more progress, I can feel it.I too am counting down the days! Hope you are both doing well!Sarah Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted January 7, 2015 Author Report Share Posted January 7, 2015 Does anyone know the difference between the blood tests for C-Reactive Protein and C-Reactive Ultra Sensitive?I was going through my labs to jot down any questions that I may have for my dr, and I realized he ordered a C-Reactive Ultra Sen test when I first saw him back in October, which was actually low.. says I show low risk for CVD. However, the C-Reactive Protein (CRP) was elevated. . I'm confused. Quote Link to comment Share on other sites More sharing options...
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