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Hi everyone, I am new to these groups and very thankful to anyone who replies. I feel overwhelmed, exhausted and frustrated. I don't know where else to turn.
In 2011, I had papillary thyroid cancer. I didn't think much of it. At the time I was never sick, homeschooled 3 of my 4 kiddos, ran my own business and worked out 3-4 times a day in preparation for a fitness competition. I was a weight lifter. In 2012 migraines became intollerable and found out that I had a massive pineal gland tumor that required surgery. I had brain surgery at the end of 2012. I still thought little of it and fully expected to return to my normal life within a reasonable period of time. I thought I was recouping through most of 2013. I finally went to a pain doc because everything seemed wrong. He was painfully dismissive and I quickly gave up. I'm not looking for meds....I'm seeking an explanation. I went down a rheumatologist realm with little to mention of it aside from a POTS, Ehlers Danlos, APS and small fiber neuropathy diagnosis. None of these things seem to fully explain how I'm feeling. They also found that I had abnormal nail fold capillaries and am consistently IGG subclass deficient also ANA positivity that comes and goes with equivocal dsdna. I'm sure I'm leaving some things out. I have had too many surgeries to count now. In the last 2 months I have had a nerve sheath tumor removed from my thigh and 2 more "tumors" removed from my neck which they thought were also nerve sheath tumors and were actually inflamed lymph nodes. I can't do anything. I walk with a cane. I can barely make it up the stairs. I weigh 90 lbs. My brain tells me to quit trying to figure this out, but my heart says I have 4 kids that deserve answers. My father died in his early 50s from undiagnosed Hodgkin's. We found out he had cancer at autopsy. The docs all told me his tests, biopsies and exploratory surgeries were all "normal". What do I do? Do I give up? I don't feel that any of my docs care about anything other than surgeries. I can't find any help. I keep trying to self diagnose on the internet, but let's face it....it's always wrong. If anyone can direct me or if this speaks to anyone....please let me know. I just want an answer. I have constant joint/muscle/bone pain body wide. I have no energy at all. I have insomnia. I have chronic migraine. I am always dizzy and nauseated. Depression is an understatement, but I blame it on my overall health. I e always been happy and easy to get along with. Please...if anyone has any thoughts...I need them. Thank you.
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@julieparton Hi Julie. In reading about the mutation you mentioned, it causes a decreased ability to detox the body and that heavy metals can accumulate. It talks about the process of methylation (detoxification) as being very inefficient and the master antioxidant that is produced is glutathione. There are suppliments for this and my doctor has me take one called Methyl CPG (Ortho Molecular) and another similar one is from Metagenics called Methycare. Both support healthy homocysteine levels. These supplements help heart patients. NAC (N-acetyly cysteine) is a precursor to glutathione. It might be that your body doesn't convert it to glutathione. I was reading about the mutation and you can have both or one of the MTHFR genes on the chromosome pairs. There are also glutathione supplements, and medical foods containing it for detoxing. My pharmacy sells them and my doctors have as well. There is also intraveneous chelation to remove metals from the body that some doctors offer. A good source for information might be the Environmental Health Center in Dallas. https://www.ehcd.com/ You can look up information, and they also have some expensive medical volumes written for doctors about treatment protocols for sale. These were written by the pioneer in the field Dr. Rea. My environmental medicine doctor recommended this and he follows these protocols.
Here are a couple links I found that explain the issues.
https://www.focusforhealth.org/mthfr-mutations/
https://www.ahajournals.org/doi/full/10.1161/01.CIR.0000165142.37711.E7
https://www.amymyersmd.com/2017/07/what-is-an-mthfr-mutation-and-what-to-do-about-it/
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Hi, @julieparton, and welcome to Mayo Clinic Connect. I moved your post to this existing discussion, "Weird Symptoms" in the Brain & Nervous System group, so that you can connect with others who have been interacting with @kriss86 as she seeks a diagnosis, as well. If you click VIEW & REPLY in your email notification, you will see the entire conversation and be able to take part.
Trying to get a diagnosis and some answers can be a challenge sometimes, so I wanted to introduce you to fellow Connect members participating in this conversation, like @ambrose @jenniferhunter @kriss86 @suscros68 @johnbishop @cokie63 and others, who may be able to provide some support and input from their own experiences and research as you try to understand what may be going on and decide how to proceed.
Have you considered the option of looking into getting another opinion at another medical center, @julieparton? Have you by chance seen an internal medicine physician to see if a diagnosis can be identified?