CFS was the wrong diagnosis for me, and I don't think I'm alone...

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Date Joined Jun 2012
Total Posts : 44
   Posted 1/8/2013 5:12 PM (GMT -6)   
First, I want to thank each and every one of you that haave replied to my posts and offered support to me. I have been sick for over 18 months with an array of different symptoms. My primary symptoms have been muscle weakness and fatigue. I have had other intermittent symptoms including tingling and numbness in my arms and legs and a million other weird things that come and go.
After Thanksgiving, I thought I was headed for a major flare up. But this time I felt more sick than I had ever felt before. I began to worry that something else was wrong, so I went to the emergency room. I presented with muscle weakness, mild shortness or breath, bradycardia (low heart rate), and numbness/tingling in both arms...and of course, extreme fatigue.
Before my blood work results were even back, I was getting the whole lecture abour anxiety and depression, etc. and how this was all probably in my head. I told the doctor that I didn't have anxiety (and if I did my heart rate would probably be elevated and not low) and that I had never suffered from depression. He shook off what I said and told me he'd come back when my blood work was done.
about fifteen minutes later, the doctor emerged and sat next to my bed and told me I was being admitted right away, that I was lucky to be alive, and that I could hold off on antidepressants and anxiety medications.
My CPK level was 28,000. The normal range is under 300. When this happens, a biproduct, myoglobin, is pushed into the blood stream and can cause kidney failure. A CPK of this level can also destroy the heart and liver. Thankfully, this was not the case for me. CPK is a muscle enzyme.
At any rate, it took a week to get my level back down into the normal range before I was released from the hospital. While I was there, a muscle biopsy was performed and sent to a special muscle lab at UCSF. about two weeks later, I was diagnosed with a lipid storage myopathy, which is a very rare muscle disease. I am in the process of undergoing more tests to find out which kind of lipid storage myopathy I have. I also have to see a neuromuscular specialist in March at UCSF (that was the next available 'urgent' appointment if you can believe that).
The reason I wanted to come back on here and share my story is because I always felt like CFS was a way of doctors to say "I don't know" or "I give up". I never resigned myself to feeling this way forever because I just don't think anyone should have to live with such debilitating symptoms. I understand I wasn't diagnosed sooner because my blood tests has previously been normal...but that said, this gave me hope that some of us, and hopefully all of us, at some point, might be able to get a concrete diagnosis...of something that can be tested for.
I don't know if everyone else feels the way I did about my CFS diagnosis, but I really struggled. So if there is anyone that feels the same, hopefully this offers some hope up.

Regular Member

Date Joined Jul 2012
Total Posts : 335
   Posted 1/12/2013 6:22 PM (GMT -6)   
I am very happy your Dr.s have found out, specifically, what illness you have and are treating it appropriately, this is what most of us pray for. Yes, CFS can be a diagnosis for the Dr.'s aren't sure, usually due to conflicting test results and that CFS can be viral/bacterial/lyme/neurological or all of those. I have EBV, I also have vertigo, vomiting, Fibromyalgia and Brain meningioma/tumors. So, its not so much that Dr.'s are trying to pass off CFS as a catch all diagnosis as much as it Should be a red flag to other Dr.'s/Specialists that this patient requires above and beyond attention and treatment. I'm not saying it works that way all the time this is just the glass half full version. Congratulations on your diagnosis, Keep in Touch, we need all the success stories we can get.
Crainiotomy Lg. Meningioma Dec.02, Bi-Polar 2004, SMI 06, Gluten/Wheat/Dairy Intolerance, IBS 06, Migraines w/pseudo-seizures 07, Dev. Septum Sur. Sept.07, 2nd Men./Tumor Gamma Knife Rad. Dec.08, Radical Hysterectomy Sept.09 w/instant Menopause, Fibromyalgia 09, Disability since 09, EBV/CFS 11,Vomiting/Multiple Ulcers, Vertigo 12, Chronic Fatigue Moderator 2013.No meds list I ran out of space.
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