**A quick note about the title of this blog. While I no longer meet the official criteria for defining CFS/ME because my fatigue can be explained by another factor other than ME – I believe that there is likely some overlap of symptoms, features and possibly the etiology of autoimmune and neuroimmune diseases that is not yet fully understood. Therefore, I will continue to seek help from my ME doctor as well as continued treatments for ME for the foreseeable future. After all, I still feel awful no matter what ICD-9 codes are attached to my name.**

As many of you are aware I have been following the trail of a possible rheumatic illness for the past 21 years. I have been more especially on the hunt since exiting the Ampligen 511 Trial earlier this year when my end of study labs revealed a positive ANA and also several other abnormal autoantibodies. After a plethora of lab draws and subsequent conformational labs I can now say that I do indeed have an autoimmune disease. Probably. Welcome to the wonderful world of autoimmune diseases.

My appointment with the new rheumatologist was a smashing success. The waiting room time was minimal (under 30 minutes) and he spent two hours and 15 minutes with me discussing my entire medical history. We covered every scrap of information that was faxed over by my ME doctor and all the interlinked computerized records of the past decade. He asked every question I was hoping he would ask; he addressed every question I threw at him with competence and proficiency; he ordered every additional test I was hoping for; and as icing on the proverbial cake he was really super-duper nice. Add to all that the fact that we have mutual friends and it was a simply dreamy appointment. I hoped and prayed that the appointment would go well, but that appointment was above and beyond anything I was hoping for.

The new rheumatologist has given me a new temporary label of UCTD (Undifferentiated Connective Tissue Disease). I expect to remain under the UCTD umbrella for at least the next month. The new rheumatologist explained yesterday he needed an ICD-9 code that would allow him to run additional tests without having to get prior authorizations for every little detail. So for the next month I will again have all the prior lab tests drawn (fifth time). I will also undergo a series of really fun-sounding exams to determine if I have sustained any organ damage. If there is organ damage I can expect further testing to follow to figure out the extent thereof. My next several weeks have just become booked solid. Once all the tests are in the new rheumatologist (hereafter refered to as Mr. Rheumy because that name is infinitely cooler than ‘the new rheumatologist’) will give me a definitive diagnosis, prognosis etc.

Mr. Rheumy did feel strongly that I do have a real (ie: not drug induced) autoimmune disease. Due to this he has put me on Plaquenil (HydroxyChloroQuine / HCQ), Celebrex and Medrol. (I politely refused the Medrol since steroids and I do not mix. He explained that he never forces anyone to take steroids unless the steroids are needed to save the organs. That works for me.) I am seeing Mr. Rheumy next on July 3rd.

In the meantime I literally have places to go and technicians to see.

It is strange to relate the title of this blog ‘Saying Goodbye to CFS’ made me sad. I have been under the umbrella of the disease-of-a-thousand-names since I was seven. When I speak with fellow CFS/ME sufferers there is a camaraderie, an understanding and an ease that I have come to rely on.

When you say “brain fog,” I understand you.

When I say, “I am so tired!” you know what I mean.

The hardest part for me (so far – give me time and I am sure I can come up with something harder to deal with) has been wondering how long have I been harboring an autoimmune disease? And more to the point, I suppose, what would life have been like if I had found it at age 8? Or 12? Or 17? Or, or, or? Now it may be that this autoimmune disease was smouldering in the background and it was just waiting to spring to life. However, if that is the case, why do I have the same symptoms and problems that I did back in 1989? Why do I feel exactly the same as I did when I was eight? Maybe CFS/ME really is autoimmune. Who knows? I sure don’t.

So far the only consolation to a life lost I have been able to come up with is this –  and I ask you to read the following with an open mind.

Don’t stop looking once you have an answer. Keep looking for new treatments and new avenues of disease. I fit the ICC criteria until yesterday when I suddenly didn’t anymore. If one person can find a road to better health because they took a second look or a third look or a 50th look at their disease then what I have lived through will be worth it.

 

Why, you may ask, am I asking you to take another look at your disease when I know you have fought for so long to get a diagnosis? Why when you have in your possession that truly precious ICD-9 code that means you are not crazy, or an attention seeker or (my personal favorite) a drug-seeker? Why do I ask you to reevaluate the fact that you have a neuroimmune illness that is debilitating even on the best of days? Because at 4:00 am this morning I woke up and wondered “what if?”

I have had the best medical care available in the USA. The majority of this care over the past two decades has been private pay, with top doctors in every specialty.  I have had more tests run than just about everyone I know. I have had the ANA screening and ANA panel so often I am surprised that the lab technicians don’t recognize my blood on sight. I have had spinal taps, MRIs, CTs, pulmonary workups, cardiology work ups, neurology work ups, endocrinology workups, gastroenterology workups and every other specialty you can think of a number of times over the past two decades. Added to this is the fact that the team of doctors who have been looking after me genuinely care about what happens to me because they good doctors. They are good people. And they want me to get better. If the best specialists in the country couldn’t find an autoimmune disease in me for 21 years, isn’t it just possible that I am not the only one?

Take a second look at your diagnosis. If not for yourself, then for me.

Sophie

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