I wanted to update my story because between misdiagnoses and my delayed diagnosis of ME/CFS my original posts don’t adequately tell what really happened. To clarify, I have both Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and POEMS Syndrome (POEMS).
In early 2012, I had a really bad upper respiratory infection. I got better but I never got back to 100% of my old self. I now know, that illness was the trigger for ME/CFS. In the fall of 2012, I experienced numbness and tingling in my extremities which was caused by POEMS. I was properly diagnosed with POEMS in September 2014 and ME/CFS in August 2016. POEMS is extremely rare, which is why it took so long to diagnose. ME/CFS is not rare, but very little is known about the disease and it is not taught in most medical schools. Due to a limited number of doctors, who know about ME/CFS, I had to basically figure out what I had via the internet. I then had to travel halfway across the country to find out that indeed I did have ME/CFS.
I’ve always wondered if the two illnesses are connected. There’s no way to know for sure, but it seems pretty coincidental that symptoms began within months of each other. There is a high % of ME/CFS patients that also suffer from blood cancers, which POEMS is.
I hope this helps clarify my story.
Original Post February 2015:
Danny and I want to thank everyone for visiting the site. The support of our family and friends has been incredible. Many of you know that I’ve been dealing with health problems for some time now. About 3 years ago, I began having increased frequency and severity of headaches, along with numbness and tingling in my extremities. By the fall of 2012 Danny and I both knew something was definitely wrong and he encouraged me to see a neurologist. My first neurologist really didn’t help much, stating that age was the cause. Now that’s just what every woman in her mid-forties wants to hear! We decided in 2013 that it was time to see a different neurologist. In April of 2013, I saw a neurologist who found neuropathy (disease of the nervous system) and diagnosed me with CIDP (you don’t want to know what it stands for). Later we would learn that this was a misdiagnosis, but at the time it was such a relief to finally be able to put a name to what I had and begin treatments. There is no cure for CIDP, but I was told that if I did IVIG infusions every three weeks for the rest of my life that the disease would be very manageable. After months of doing treatments, however, I was not improving and getting my neurologist to listen to me was a challenge. He kept saying that I was improving and the IVIG was working even though I kept telling him I was getting worse. FYI…my final and correct diagnosis does not respond to IVIG at all. Once again it was time for another opinion. Before I finally got a good diagnosis, I would have to meet with 3 neurologists, 2 rheumatologists, 2 urologists, a pulmonologist, a cardiologist, 3 physical therapists, and a hematologist/oncologist who finally figured it out. In addition I would have 7 MRIs, 9 CAT scans, PET scan, bone marrow biopsy (you can’t deaden bone –ouch!), and numerous nerve conduction studies/EMGs where they put needles in you and run an electric current through it (referred to as the torture session). Believe it or not though I was one of the lucky ones. So many of these diseases are so rare that it can take years to diagnose and I’ve heard horror stories of people receiving as many as 10 to 15 wrong diagnoses and waiting years to get the help that they truly need. So I’ll get to the point now. I have an extremely rare disease called POEMS Syndrome. It is a multi-faceted disease affecting the nervous system, causing bone lesions, skin changes, and edema/ascites, all of which have affected me. There are multiple other organs that can be affected, but I fortunately do not have organ involvement yet. It can also be terminal if not caught in time and treated early. People always talk about life changing moments. Well this one was it for me. Up to this point, I kept thinking we were just hitting a bump in the road and I would soon be better, but with POEMS I knew it was serious. The good news though is that with this serious disease comes a serious treatment...stem cell transplantation. That gave me comfort and hope knowing that I would have completely new bone marrow. I will be beginning treatment on Monday, February 23rd. I’ll have about 3 weeks where they will perform procedures ensuring I am fit for the transplant and collection of my stem cells. I’m also fortunate to be able to use my own stem cells, which will make the procedure go much more smoothly as my body should not reject them. I’ve spent the last 4 months in what they call conditioning to reduce the number of bad plasma cells to an acceptable level so that they can use my stem cells.Once again thank you all for your support as we go through this next step that will hopefully give me my life back. While the last 3 years have been difficult in so many ways, I consider myself a lucky woman. God has been with me throughout and given me peace that I would have never been able to achieve without Him. My relationship with God is stronger than it was prior to the illness and my priorities are much clearer. He also gave me such a wonderful family and all of you! My immediate family has been incredible. They’ve seen me at my best and at my worst and they have loved me through it all. We received a compliment from the band director recently. He asked Danny how we had two kids that were happy all the time. Considering what we’ve been going through, that made me feel so good to know that they are handling things so well. Danny is our rock and always there to keep us grounded and focused on the hope of treatment. In my opinion, the caregiver in chronic illnesses has an even harder job than the patient. He has to keep our life going, be a father, continue to work and be there for me when I have really bad days, which I have had plenty of. My extended family has been wonderful as well. My brothers, sisters, parents, Danny’s parents and sisters…they have all been there for me. And then there are the friends and even new people I meet who hear about what we’re going through and say they are praying and lifting me up. We receive meals regularly which really helps and they have been sooo good. Thank you to all who have prepared meals for us. I get cards and gifts constantly from the Riverside Church in Kerrville and my brother's small group in Abilene. It is overwhelming how much love and support we feel from all of you.
Since the Coronavirus outbreak in America, I have had a message on my heart that I want to share. I've been social distancing and staying at home for almost 7 years now. It is, without a doubt, tough! Some may look at my situation and think that God is not working in my life. That, however, couldn't be farer from the truth. Only through God, have I been able to accept this horrible disease and be at peace with my plight. Even if I am not healed in this life, I know that this is temporary because I have the promise of no diseases in the next life. With all of the heartbreak that people are experiencing during this Coronavirus outbreak, I want you to know that through God, there is hope. For those who have or will lose loved ones, please know that I'm not trying to downplay how truly devastating that is. Just know that God is there for the most difficult times of our lives!
Patients and caregivers love hearing from you; add a comment to show your support.
Help Holly Stay Connected to Family and Friends
A $25 donation to CaringBridge powers a site like Holly's for two weeks. Will you make a gift to help ensure that this site stays online for them and for you?
