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Posts (17)

Aug 9, 2019 · H63D Gene Mutation & Severe Iron in my brain in Blood Cancers & Disorders

Hi everyone, long story short, I had a fractional MRI in 2013 bc I was experiencing some cognitive issues (short term memory for the most part). The results stated that I had severe iron in my brain for someone my age (46 back then) and that the iron is indicative of one of the neurodegenerative diseases.

This part may or may not be related. I saw a hematologist and tested positive for the H63d gene mutation. So I'm not sure if I have hemochromtosis or not.

I would really like to get an appointment in Rochester but don't know where to start. Is there a dr that I could email about my questions?

I just want to get ahead of this and do whatever I can to keep living a full life.

Thanks and positive vibes to all!


Jul 31, 2019 · H63D Gene Mutation & Severe Iron in my brain in Blood Cancers & Disorders

Hi Sunnyside17,

Thank u SO much for your response! I will definitely check out that website! May I ask if your husband and daughter tested pose for the PANK gene mutation and/or other gene mutations?

I have not done any phlebotomy or even chelation meds. I just want to get ahead of this if I can. It's my short term memory that is just awful. There could be some devastating issue with a family member and i will completely forget about it, unless i keep reminding myself. I've gotten tired of hearing my mom say "honey, I told you about that." I feel so stupid!

Best wishes to u and your family!

Jul 30, 2019 · H63D Gene Mutation & Severe Iron in my brain in Blood Cancers & Disorders

Hi everyone,

I will try my best to be concise with my issue. In 2013 I had breast cancer and had 3 surgeries that year. I felt that I was having some cognitive issues (I didn't know if it was from all of the anectisa that year). My doctor ordered a fractional MRI (at University of South Florida). The results came back that I had severe iron build up in my brain for someone my age (46 at the time) and that it was indicative of some of the neurodegenerative disorders.

My dr told me "not to worry about it." However, being me, I'm concerned about it! So, I went to a Hematologist in Sarasota and I tested positive for one of the more unknown genes for Hemochromatosis the H63D (homogeneous). Yet, my overall ferritin level in my body was low. My hematologist said in his 20 years of practice he has never seen anything like it. With the iron being in my brain but not other organs.

Does anyone have any information on this? I now live in Wisconsin about an hour actually from Mayo in Rochester. I would really like to know what is going on because if I can do something now about this iron that would help me, I want to. I'm very concerned about this. I haven't had another fractional MRI since then. However, my 2011 MRI is uploaded in the Mayo system (I saw a Neurologist in Eau Claire, WI), but only had the report at that time, not the images.

No one there seems to know what to do with me.. Any input is greatly appreciated! Best wishes and positive thoughts to everyone!


Jun 29, 2019 · Any Adhesive Arachnoiditis members here? in Brain & Nervous System

Well said! My best wishes to you. Sending healing and positive thoughts.

Jun 29, 2019 · Need TKR and had positive allergy testing / Bone Cement and Metals in Joint Replacements

Hey there, Gardening junkie! Thank you SO much for this info! I have been using more cilantro lately in even my pasta dishes, and it turns out great. I also like my himalayan salt block, where I bake veggies for dinner or for a snack. It doesn't have that salty taste and is really a mineral. I'm trying to get back to just eating healthier again, after some stress this past winter. I will definitely schedule an appt with an allergist again. I had a host of allergies growing up, had the special bedding, allergy shots every week et. My daughter is allergic to nickle because from what I understand some gold even contains nickle. She could never wear earrings. And a couple of my nicer rings would make my finger turn blue.

Now I just have one last question for you….obviously you like to garden…awesome. How should I be storing my garlic? Because I got this little mesh bag from my mother in law and then the whole thing was put in a container and the garlic is spoiled in a week or so. I trust your recommendation!

Thanks! Laura

Jun 29, 2019 · Hot weather and neurological disease in Brain & Nervous System

Hi Erin, thanks for the well wishes. My mom has done acrylic painting and enjoys it. I will need to look for places around me; because that would definitely be fun!

Jun 29, 2019 · Fibromyalgia Medication and treatment in Autoimmune Diseases

Hi Sundance! Nice to meet you! And so glad that you were finally connected with a rheumatologist that seems to be addressing some of your health issues. Its so unfortunate that the other 10 docs didn't. okay, I know this joke is bad for a support group, but I've said this many times "what do you call a Dr who gets all C's in medical school? Doctor. What do you call a doctor who gets all A's in medical school? Doctor. I have empathy for what you went through, the time, energy, money, explaining yourself over and over to each doctor and from my own experience beginning to feel a bit crazy (at one time fibro fog was putting it mildly!)

I've also taken Lyrica and Neurotin (Gabepentin). And both of those just don't work well for me. They basically have the same pharmakinetics (this is how a dr described it to me), except the Lyrica metabolizes differently in your body. I feel pretty bad every day, but when I get a flare up, it feels like my entire body is on fire from the inside out. And when I take the lyrica, etc. I wake up every day with horrible neuropathy in my hands and arms. Sometimes down my entire right leg from my hip to my toes.

I do feel that they will figure out what exactly fibromyalgia is; they just need more studies. For me, I have injections throughout my spine for the pain and I had an epidural in 2008 when they thought I might have Meningitis. And I have severe iron in my brain, which would be indicative of an early onset neurodegnerative disease. However I also found out that when I saw a Hematologist I tested positive for a rare hemachromatosis gene from both parents. And interestingly enough these injections I've gotten over the years for the horrible back pain can cause some Rare Autoimmune Disorder (I read about that on NORD). So, I guess my rather long answer is keep on keeping on! Maybe check on the NORD website and something may jog your memory about a time in your life or maybe they just haven't figured it out yet. I hope you have a great weekend! Sending positive thoughts your way! And to all!!

Jun 29, 2019 · Hot weather and neurological disease in Brain & Nervous System

Hi Erin, My symptoms also get worse when summer arrives (I'm from tChicago) and live in WI now. But at one time lived in Florida for several years, where I was treated at Moffitt Cancer Center in Tampa for my breast cancer. I did enjoy going to the walking pool and made up some of my own exercises which definitely helped me mentally. But now I live in such a rural area that I have to drive 30 miles just to pick up a prescription. So, I've also thought of the very question you raise, which is an excellent one! I would like to learn to crochet. I've recently looked into something new called "Zentangle." This is really a form of meditation. I bought a work book on Amazon for $8.99, called "Zentangle 1" and you practice drawing, for example, circles, waves, ovals, a queens crown, and before you know it, you've actually created a piece of art once it is all put together. I suppose one could put the pattern on a t-shirt or socks, a bracelet, etc. Maybe I will finally get in touch with my creative side! It sounds like you definitely have one!

And I like to read, usually books that have some humor and are a little on the lighter side because I feel like I'm reading medical stuff all the time….

Yesterday I ended up with a horrible migraine and was out for pizza with my fiance and ended up vomiting. It was horrible. I'm on meds to prevent migraines but they don't seem to be working very well. I will probably go back to Botox injections. I see my neurologist on July 23rd about the severe iron in my brain. I do have fibromyalgia and arthritis, but cognitively something is also going on. And I think it's great that you are addressing such an important topic! Sometimes the worst thing is just to be alone with your own thoughts….

I hope that you stay cool! Positive thoughts coming your way! Laura